ADOLESCENTS WITH ASPERGER'S SYNDROME:

A QUALITATIVE STUDY
OF

SOCIAL INTERACTION FAClLlTATlON

BY
KATHRYN MAY WADY

A Thesis Submitted to the Faculty of Graduab Studies in Partial Fulfillment of the Requirements for the e g m of

Department of Educational Psychology University of Manitoba Winnipeg, Manitoba

(c)September, 1996

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THE UNIVERSITY OF MANITOBA

FACULTY OF GIUDUA1G; STUDiES

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A Thesis/Practicum submitte to the Faculty of Graduate Studks of the University of Mnnitoba in partiPl falfiiiment of the rquinments for the degrce of

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Abstract

The author ofthis audy interviewcd eight peuple who were personaily or p r o f d o d y involved
with adolescents with Asperger's sydromc, asking mch participant to &scribe Asperger's

syndrome and ways ofhialitahg SOCM intadon fm a01cscc11.f~ with Asperger's. Vabatim
quotes h

m the pcaticipants, who inc1uW an adolescent anclan adult with Asperger's syndrome,
ciment mdembnding of

are includcd in the thesis. The litaohrrr rcview gives mwarchers'

Asperger's syndmme. Esaiishing a network of knowicdgeable, carhg people wbo can act as

mentors, social interpreters, and advocates, develop rclationshipsbased on tnist, mconditionai

acceptame, and &rmation, and pmvide supporteci, stmctmd opporhmities for social interaction
is descri7 as a way to fiditate social interactions for adolescents with Asperger's syndrome.

Achowledgcments
1wish t o acbowledge and tbank the eight people who 1interviewed and d o s e words

and thoughts fonn the basis of this thesis. 1would also like to tharik those individuals with
Asperger's syndrome who have been described in this thesis. Martin, Frank, David, Nancy, and

Jane have added ta my understandhg of Aspagtt's syndrome. They are aiso an integrai part of

tbis hesis.

Table of Contents

INTRODUCTION

.......................................................... 1 Socid Interaction with P e c Piime ~ Deficit ....................................3 Not Ha* FricnrGQComma f a Tbwe Wlth A s p q e r ' s syndrome -3 Adolescent A Hiirt by Tasiiis, Bccomes Cautious WithPm ........3 thasNotice h k ofFricns 5 Adult A A Thit He Needs to Initiate Fricsdsbips ...............6 IneplnopNtc Sooirl Stntegics L d t o Rejcction ........................ - 7 Hmrt ofRoblem for Thosc with Asperger's ...................... - 7 Diffcult People t o LiLe -8 9 Some Behaviour Scca As Cm1 othm May Fu1 H' a d Rejcctcd by People With Aqwtgcf's .......- 9 Abilities of Those with Aspergds May Compound Roblans ...................-12 Aras o f Ability Hiac Disabilities d Slow Diagnosis .................... 12

......... ..................................

...................................... .................................

ArresofAbilityLeedtoLadrofSupportaidOwrExpcctaf~~ ...........13

Individuals With Asperger's Able t o P c d v c Thtir Diffcfc~~ce .............14 Kaow Not Part of Mamstrramor Profouadiy Autistic Population ....-14 Fnistraiedy Diffbmncc ....................................-14 Do Not Want to Be CategorizedAs Disabled .....................14 Catch22 SituationIn~rt~l~e~RiSICS ..................................-15 Socid Misundersiandhg May M t o Physical Danger ..................-17

BACKGROUND 20 Literature Rcvicw: Asperger's Syndrome ................................... -20 Historicai vcrview 20 Diagnosis and Diffkrcntiation of -et's Syndrome .................... 21 Diffctc~~tiation F m Autism and thcr Disordcrs 21 Mhentiation of Asperger's Synbome From Kannds Autism 22 Areas of Agreement Betw#nAsperger and Kanm 22 Arcas of Disqlp#mcnt Bebmn lrspascr and Kanncr ........23 Rcintroduction of Asperger's Syndrmne ......................... 28 Active But Odd and Aspaga's Description of Autism .......28 Modificationst o the Dhgpmtic Criteria for Aspaget's Syndrome
31 Criteria f aA9prga's Syndrome Established Similar Profile h l o p s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Asperger's Onginai Diswrtadon Translatai ................33 .....................33 Social I n d o n Dcficit Critenon Kcy Description of Social InteractionDcficit of Asperger's .......35 Research Evidencc Linking Asperger's Syndrome and Autism ........37 mprovcmcnt With Maturation ..........................37

............................................................. ............................................... ................. ....... ..........

.............................................29 .....................

~ i n F a m i l i c ............................... s 38 FksuKChD3lbmmg A t p r g d s Syndrome d Autism .........- 3 8 RcvaIci~ce md Etiology of A q q p f s Syadiome .......................- 4 2 Pmmlence ................................................ 42 Etioloey 42 ......................................... Ca&gariZationIDSM-IV 43 Categorizrdion and Description in the DSM-IV ...................43 F t ~ Airtissn m in tbe DSM-IV .................... -44 RcJeiiich I n . @ n g the Socid lataaction Deficit of Asperger's ..........45 OvCNiw o f Social Iirteraction Rcsearch ........................ -45 'Ibcory o f Mind Rercarch ..................................... 46 'heorctical Explanations for Aulhn a n d Asperger's Syadrome ...........- 4 8 Relationai Deficit Explanation ...........................48 ................................ Rc1cvance Thcory ExpIsiirdjon 48 Lack of C d Drive far Cohcrcnce .....................48 Cognitive Orgrnizsbion M k r s .......................... 49 Practical Implications of Rtlevance Thcory ...............50 Research lnto Facilitating Personal MemctionNext Step ..................50 Personal involvement With People With Asperger's SyaQome ...................51 Sensimg the Barria as a Tcacher ..................................... 51 University Paper Lesds to ProfesSional involvement with Asperger's ........ 53 Rationale .............................................................59 W h y Adolescents W i t h Asperger's ...................................59 Adolescent Devtlopmental Stage Cmcial for Intewention ...........59 DeteriomihgPsychoiogical Heaith at Adolescence ................ 60 Diagnosis an Issue a t Adolescence .............................61 Asperger's May Mimic Mental b e s s .....................61 Adolesccllce May be T i of Diagnosis ...................63 Ri& of Violent, Anti-Social Behaviour by Adolescents with Asperger's 64 Cause by Rage and Fnutiation .........................64 Causecl by Ri& Egocamic Thinlring Pattern .............-65 Adolescence Time of Opparhniity fm Intervention .................66 Why a Qualitative Study ........................................... 67

..................................................

METHOD .................................................................. 69 Participants ............................................................ 69

WhoTheyAre How They Wac Ramited

...................................................69 ..........................................70 ............................................................. Iatervicws 73 Interview Fomat .................................................73 Analysis of Intcrvicws .............................................75
Observer During the Interview .................................75 Tianscribing Enphcd Content and T e x t u r e of litewiew ........... 75

Memory Bank o f ~ o u IsU ~ C W AS U o d Cuntinuous Analysis . 76 Post-riltervicwsand Post-TmnsdptonAnaysis .................-78 Mini-Intvi~ws.....................................-78 F d AnalyJis ofIntenriew Data -79 Writingthc'Ibesis -81 OtbcfSourccsofData -81 TnimepirtionofData -81 FounatdPmoasofWiitmgtbeThcsisDocinnmt ....................-82

...................... ..................................................... ............................................ .............................................

DATA ANALYSE AND DISCUSSION -84 Struche for Data Analysis d Discussion .................................. -84 DesgiW>iiiglsspascr's Syndrome -84 -84 Qualitative I m p a i r m m in Sociai Interaction vcrview of Social kriaaction m ~ c n t -84 Seosiagthe Barricr -85 Thcy Dai? fnvitt -86 Thcy Lack Social Intuition 87 Restrictcd Repaitive and Stcrcotyped Patterns of Behaviour. Intcrtsts and Activiies *89 Impahncnt in Social, Occupational, or thcr Importaat Areas of Fmctioning -95 -96 No SignScant G e n d Delay in Laquage Participants Disagrcc with DSMW Criterion -96 hdinduals Diagnoseci W~th Asperger's May Have Hed Delayecl Speech Developmait 96 DifiCuitics With Using Langucige for Communidon -97 No SignifcantDelay i n Cognitive Developmcnt, Self-hclp S U S .Adaptive Behaviour. or Orcosity About the Environment 100 CriNot Met for Another PDD or Schizophmk .................... 103 104 CritcriaNof Met For Anotbcr PDD CritcriaNot M d for S c l b j h n h -108 M i t i a t i n g Asperger's &m Obsessivc-Cornpuisivc Disorder 108 otbcr Suggestcd Diignostic Cntcria -109 Malice as aDescriptive Citaian for Asperger's 110 112 Problem-SolvingDeficit as a Descriptive Critcrion for Asperger's ................... 113 Tre8fmcnt Plans for Adolescents With Asperger's Syndrome Growth T b u g h Relationsbips 113 Supportive. bving RelationshipNcsmy -113 Heaithy ScwPaccption 118 118 Estalishiiig a Relationship Key to Growth Rcspdng Cornpetence. Worltmg Togaher Enhsnccs SeIf-Estam .................................. 121 Rcsp&ng Autism as P a r t of Who Thty Are 124 Mentor for Intcrprrting the Social World ....................... 126

......................................... ......................................... ........................... ...................... ......................................... .......................................... .................................... ................................................ ............................ .................... ........................................ ............. .................. ............................ ........................... .......... ................................ ................. ... ..................................... .................... ..................................... ................
..............

Base for Stnicaaingthe World ..............................-132 GtowhThto@ArcasofStccngih ..................................136 T r r a i m e n t Plpas Sbould IavoIvt Arcas ofStrrogth ...............-136 V ' d Attention to Detail U s d in Tmtmcnt Plans ..............-136 AteaofTntchstUdinT~ta$11ent Pians ......................-138
CONCLUSION

......................... ~ D . m ~ ~ ~ ~ D ~ ~ ~ m m L ~ ~ * m e e

INTRODUCTION
Asperger's syndrome i s a lifc~hithg, aacial WiIity. An Anlescat with Asperger's

syndrome is ke the boy in the bubble, sqmd hmthe world y an invisiiie M e r . Accnrs to the world i s cnicial for psychologicai andexnotionai tamival, anci yct the invisiile W e r
prevents meanin@ intaactionh m taking place. F

ia way to b m k tbrough the bubble

and create a d e mute t o social interaction wiJl d o w adolesccats with Asperger's to have a
healthy future. This i s a study of how adolescents with Asperger's mey be helped out of the

bubbie.
Sensing an invisible M e r is one way that professionais intuitivcly identify individuals
with Asperger's syndrome. Teacher A descrifi a sheii, or a kind of absence, mmd someone
with Asperger's. The person is visible mder the sheli, but the shell disallows easy, intuitive,

human comection. It is like a plastic wrapper which prcvcnts a connection with the person

underneath. Teacher A explains the plastic wrappn d o m :

I see people with tremendouspotentid who me hindered by this werloy.

huve

ewry characteristicfor success and thenp u thtow th& b l d t on top of it. It 's Iik plestic. A A I of those good things me t h , but they 're ohucrys m@ed through this plastic
wrapped around them.

Whiie nal interaction is prevented by the aqamnt barrier, the petson undcmeath is
uniquely visible t o the world. O n e can view the thoughts and falings ofromwne w i t h

Asperger's i n ways tbat most people do wt aiiow. They may k identifid by their u n d
opemess and honesty to the point of extrane naivety. They will bluntly teil you exactly what
they thiak of a new haircut or a new person. For example, one boy with Asperger's stood up in

,thatthcsamonwastoolongendtatitwas church and annomcd to his M e r ,the minisrci

time for him t o quit taking so t hcvayont codd p home. Pcrhaps the boy who mnomced
that the empeior had no clothes had Aspcr@s sydmme. Such naive honesty invites both

respect and ridicule. To those who work with this community it tcprtsents both a b l d g and a

cwse. Tacher A expiains the d u c md homur of bcingable t o sec into someone's soul:

Because & with Asperger's &orne

me verbal,p u cm h 4 ~ their k thinking ami

feelings. You see so much of the human thidng in them becatm they aIIm you to. And
you don? get that opprlturity with other k i & .

WMchtp a great giP a d y o u 'vegot to be

so cmeficl with it, p

u know?

Caring and compassion are T e a c h e rA ' s reactions to the blunt honesty of individuais with
Asperger's syndrome. Unfortunately, their social naivety does not invite such a humanistic response in evexyone they meet. OAen, individuals w i t h Asperger's syndrome are faced with

teasingsridiculesand rejection by others when they inappropriately attempt to make a social

comectio~~ Eventually, auel, rejccting laughter h m potcntial amphtances leads individuais with Asperger's to withdraw and t o cease initiating social interaction. Accumuiated hurt, anger,

and distnist i n w s the M e r between individuab with Asperger's and the world The
negative resuts of such social naivety may k profouad lonelincss, dismal seIf-estcem, and Methreatening depression.

Teacher B m e d ad

o which explains how devastahg an inability t o understand

and enter social situations may be for those with Asperger's. 1&ad

him to describe a social

interaction which was a disaster. He related the foflowing story about someone 1will c a l David,
an adolescent with Aspergefs syndrome:

The exumpIe I would u e ir o f uyaarg nicar w h has spentprobobiyfiiPQcnpars on the periphery of social citcles. He bas newr reoUy -the opprtimity to interact, &th

because of his insecwii and& lack of social skiIIs- ne &ry, hr thought that he htad lemned that one way to enter SOCW circles is to m a k un impression So k came into
the H'ghSchool l i b r q , w k e all ofhis s01~uI1ed W i e s were laratecl: attenipted to do
O

handstQIICj: andfilljraton his back

fcourse this um*rurl, inappropte iet led to loge amolmis of ZuughterPom

evetyofle who war observing. Z%elmghtet becme a catolyst to mr iwedible mount of

unger wiriin the yomg m m And sa hir attempt to engage in a social milieu became the

most embarrassing ond disheartening o f situationsfor him

He Anau, "I want tu impress these indivi&fs. " But hi$ uttempt to do so quicHy
reverted into the worst possibIe situation, where he not on& embmassed himserf;but he

got very angry md he started to threatenpeople who were faughingut him

With this devastatingresult t o an attempt t o intctact socially, it is not surprishg that individuais
with Asperger's syndrome may eventuauy give up any attcmpt to enter social situations, deciding

that ionelinas is a betier altemative to ridicule, acute embariassmcnt, and psychologicaiiy-

wounding peia Social Interaction with Pecrs Rime Deficit

When 1was asking him what Asperger's syndrome meant to him and when he first

beuune aware that he was somehow diffrent fiom most other people, Adolescent A kgan to

describe his f h telrpaiences with being tcawd. ur convasation went like this:
1 :

When didywufirst becorne sort o f mare thatyou w a r a little bit dzflerent thun

most other people?

Ad:
1 :
IPnen wm Ifirst mvme? MhmmHmmm,

Ad: I:
Ad:

Thm's a d g w d question,
Ifyou think bu& when didyou start thinking abaut il? Ah. probabiy when those meathead kt& that wed to be in

nyeghbourhood kept

calhg me names.
1 :

So there were kds thaf were reolly b u g g i g p u

Ad:

Yeak
How old were you then?
Imwt have Been seven or eight or sonething like that.

I=
Ad:
1 :

Yorr started thinking like, "Why me these kids b w n g me?"

Yeah Like they gave me the old truiitional label.
Oh.

Ad:
1 :

Ad:

Retard
Oh Sb they were really m a l .
Oh, yeah. Tnq,were morons.

I=
Ad:

Even taday, as an eightccn-y~8~1old, this young m m i s still d c r i n g h m the hurt

imposed on his eight-year-old self by the cruel taunting of his neighbourhood peers. Those
jeering comments, and probably others like them, have taught this young man to avoid

approaching otha.

H e docs not attcmptto makt &iends. hstcad he waits for othcr people to

approachhim i n a nieadly Won. Evenso, hc is cautious d awarc of the angcr of "gening

burned." When 1explainni tbat most experts sec aociai interiaction diflfidties as one of th prime deficis of Asperger's syndrome a d k , therefote, tby wuid say thai hc wouid have
pmblems with intaacting with otha tnagas, thispung man -y
Adolescent A

used his stratcgy of malong %ends as an example of how dilicuthe fin& interacting with other

teenagers. "Weill jwt my basic spategy of iMkigfiends. Iwoit/or otherpeople to initiate

things befoe committing myselfo them. " Conccivab1y, bis yomg man could wait for a long
tirne before a pa would initiae a contact.

Not having fiends is a conunon expaiena for those with Asperger's syrdrome. Each of

the people that 1interviewed commented onthe lack of tnendships for those with Asperger's.
When 1asked Teacher Assistant A t o givc an example of p r social interaction skills being a
problem for those with Asperger's syndrome, shc stiited succinctly:

don? hovofiiends.

None of them havejFied. " Parent A expmscs the pain that shc feIt when she obsemd her

son's futile attempts t o enter neighbowhood fricndship circlts.

Rom three ycms of age MtiI twelw p s of age k di&? have mryjHendc He coulrlh?

p k y on the sireet. Iinagne yar have a kd who amP walk out the door andpkly. when they me plrryfng hockey on t k sfreet, when they me Mimlng a r o d with their water

pistols, d w k n thty mo Ming tkir bikes, or whatever. He wodd enter and within ten

minutes something would @pen

andhe was &CA. So he warpfitmdly Zone&.

Eventuaily, Parent A's son, who I will c d Martin, gave up. Like Adolescent A, Martin quit

It jwt diclhr work I meun t l m was ahu4ys a glirch &mething nqppCned thut o f f e d d him, or mgered hfm, or hwt him a whever, md he was bakk in the howe. An
evenncally hojvst di&t l w w the house. Youbiow, m n E u a l y k just shut d4wn

The tweaty-thce-yeat-old adult with Asperger's syidiome, who 1iatervicwed, agrecd

that socid contacts were difflcuit for him to initiate and hat be, a b , had "got burned" in the past. However, he is also very aware tbat he ne&

t o initiate social contacts. When 1mentioned

Adolescent A's strategy of always waiting for prospective fiends t o ajqmach him, Adult A

commente&

You bww t h fP the unfortmute thingfor me right now. I think I'rn not aggressive

enough. And th4t is the trap that you cm get hopped in anAdolescent A [sic] cm get
happed in, ifhe jwt w a h . You'vegot to let p u r guord dmvn a Iittle bit.

And unfirfrrnatei'j?,ifyou don't letyora gicol.d d o m at d l . yoic mqy not get

b m e d aguin by unybo& butyou lose mry chancefor &pinesr.

You lose rht.

Adult A's open d y s i s of his H e dilemma almost movd me to tears duiiag out

interview. Although he was speakiag in clichcs, 1scased the pmfound loneliness that he m u t
experience. 1elso felt the dtspaationthat he i s aicounterbgbecause he hiows tbat he must

develop m e -

rclationsbips to have any chancc of hiippiness, and yet he has no idca of how

to go about initiatiDg a aiendship.

I told him that his oommcnts wac reaiIy profound. H e then

describeci the c m of bis social problems and we d i s c d the pain that he might encornter i n
initiating social contacts.

A:

I'll tell p u the muh. I have to start &ating. 1huve to. I don ' lhave a girlfirend I

think 1d to get a giilflend I thh I ueed one. I ' W got to stcut dcrh'ng. And for me to do thot, Iam going to have to stmt to t h chances.

Yeuh,p u are. Ym'ro gohg to have t d

I'm going to have to t& w y big chances here.
M y m c me going to have to reaiize t

k p niqy k rejected sometimes.

Yes. then no one LS ewr going to sqy yes, either. But ifyou don? t a k that chanceB

nim 's tfght.

Yeah,
And that ' s rough.

But, it 's a s w y thing to do though

Yes! A d I krmv I am going to make thatj m p vety sma

Well, that s ' good

Don 'tkKM' how. (zmcghs)But Ithink that might be somethingfor Teacher B

[sic]and I to talk about.

Wanting t o makc social contacts, but not knowing how t o do so and aicomtering ridicule

and rejection when inappropriate social stratcgies are uscd,i s the hcart of the problem for

individuais with Asperger's syndrome. Tbey may ccase initiahg socid contacts, as Adolescent
A has, or they may anxiously attempt to connect, as Adult A i s p l d g to do, and nsk repeated

faim and njection. U n f i l y , t k i r Idr of social

may lesd dum to behave

in ways that sam vcry antimcid, b b , and maaucl. niis soaslly unusuirl, m v e
presentationmay @y lea to *Won by icquiiidimEes ind even t o the s c w b g of long tam

professional nlatioasbips. Parent B cxpains how ba a u g b f s bebaviour is inimaprrted by

people thcy mcouata i n public.
She ll do &d eccentric thtngs t k t seem v e v wiZl@d. And so k r behaviow gets

intetpreted as rea& bod behuvitnu* Pm mit with J i [sfc] ai2 the tirne#d Jane will s t m yelling m me or do something thar is red& v e v inctppropnate for her age.
to

The speech and language jmthologist who 1intcrviewdd pcraives individuab with
Asperger's syndrome as being v q antagonistic and as difficult people t o like* She believes tha

people with Asperger's syndrome do not understand how their behaviour and cornmats may
offend and hurt others. However, Speech and taaguagt Pathologist A d m klieves that those

w i t h Asperger's synbme tmly want to k part of the social world, and that they are
unintentionally building W c r s to fi.icndships. She explains how they inadvcrtcntiy sabotage
possible friendships.

I thtnk thrir they are ve7y di@at people to fikJ in generd. Very difait. I think t h
they krow enough to be pleusant w h theyfist meei someb&.
fool people. So they t h i d nOh, rhts is oplain. ordi-

And that cmfirst of ail

kiki " And a t the same tirne,

withhr an hour of meeting thut Asperger tperson, thafAsperger's person c mjurt do something so hwtjL1 to one'sfeelings. These Asperger's people don't invite. They don? invite people to be warm to

them. Or to l i k them And I &fiel red&, they want to k pmt o f the world And they
just donk see itow they me Necttng others- Ol thqy &nt t& seriota&, eitkr. I think
thut they react 80

aperson in some hostile way because of some moncent in time. And

they don2 reake how that i r gecting thot otherpcrson

Teacher Assistant A described how one student, who I'il caii Frank, scemed to like to see
people ernotionaily siimd up and how he would plot ways of causing an emotional reaction in

VUlLlerable others, without coaside~g the painthat he rnight be causing and the relationship damaging corisequences of his actions- She describecl Fraak's weird laugbter and the apparent

high that he got h m inducing these emotional rmctions. Teacher Assistant A believes that what finally stopped F

d h m pursuing this khaviour was the shocked d o n of authority figures

to what she describes as an act of severe cwlty by Frank. She believes that Frank did not want
to risk disapprovai by authority figures, who were important to him. but that he still did not

understand how cruel and h

d his behaviour was.

Although Teacher Assistant A has had severai long term professional relationships with

individuals with Asperger's syndrome, shc has dccided t o stop worlong with this population. Part

of her tcason for Ieaving the autism-Asperger's field is the hurt and pain that she has felt when
these individuais have sevacd ties with hcr for no appmat rcsson. Both Fm& and David have abruptly ended their relationships with her despite hours of opemess and giving on her part. She

no longer feels able to give to a nlationship with individuals with Asperger's, because they may
cut off their relationship at any time and because she does not meive h

m them. Teacher

IO
Assistant A explains the difncuity she has in gttemptingto maintain nlationships with students

such as Frank and David

I&n'r mut the* relktionssldpswith me. Iguess fie giwn myserfvevfieeQto them. and I think itL th& wJnerabiIi@t k r e m gets to me* Yar krm* t k r e fs sumethimg in me
thor oponr q to t k m andfiels teal& coHortabk with these sidkns. &ght
m 4 y .

don? have to work m it. Ih,not siapised at ony o f the& reuctions* Lie Pm open to aqything aqy Und of reaction. And Pm not a # &

o f anger. Z&nV get shocked a t some

of the things they do. 1c m still get hwt becme IhcrvenS learned h m to distance nryself fiom the relationship. And 2 haw fonned relationships and I have k e n red& hurr by

Frank [sic] d David [sic]. Red& htlrf.

And men though David [sic] LP able to sqy maybe a word or two to me once in a
while, when it's w y , very quiet?and there's no one a r & md he's in a good mwd If's

only hrrppened a couple o f times. Ii maks a difference. But Pm always on the d e N i v e

now inside. I h l d myselfmore distant?because I think Y's an emotional disabili~.And 1

don'?want to get hurr men though I tend to opon up,and be vulnerable~ rmdshate things about myserfthat are p e r s u ~with l them. Zt's not thut they51e ever betrayed me, but it's
thefact t h t I cannot receiw. And i f l c r m receive, l i h in a mutuaI sense, I cm?mut that it might be cut offfor no remon at 0121experiend the severing of tics that Teacher Assistant A is d d b i n g with D

a. as

well. I had worked intensivdy, one-on-one with bim fot most of one tcrm at school, affci he

refbsed to work with Teacher Assistant A. For the -der

of f h t term 1attended class with

him and tutored him on an individual basis. 1spent m o s t of each schwl day with h h and for the

11

majority of the time we woritd donc in a smali, isolathd audy m m . He did exhibit some

musual, biniire behaviour, such as making lou Judden noises, irnitating one of his teachcr's fot
prolonged paiods of tirne, mi asking me wbet 1would do when conontadwith violent
situations. H o -

for thc most part he participiitcd in rtudy sessions and he semd t o

appreciate my cx@sc.
Suddeniy, d the kginning of sccon tam bis attitude t o d me nsibly cbanged- He no

longer wanted me anywhere near him. In k t , if1attempred to move close enough t a him so that

we codd both read the same piece of paper, he would viciously tell me ta move away h m him.
1told Teacher A that it was as though he had suddedy decided tbat 1smelled. By bis body

language and his harsh, angry m e of voice, he was showhg thst he was utteriy r e j e me.
His rejection was so bletant that it was ridiculous. At one point he pinposely placed a walhnaa
on the side of his f w so that he could not see me as he passed me in the M. Obviously, 1could

no longer work with him. 1rn p d e d as t o why this sudden a d uttcr rejection occurred.

M g , musuai social behaviour by individual's with Asperger's syndrome is cornmon.

Strangm perceive this behaviow as willfu, d e , and even deviant Helping professionals and

relatives may k p m f o d y hurt by it. Bot'aquaintancts and people who have known

individuais with Asperger's for years, r r m y be unablt t o gct past the M e r s of socially inappropriate, bizarre behaviour to the person underaeath. Whcthcr the hiia and rcjection cornes fiom the individuai with Asperger's or from the people in M e r conmiunity, the individuai with
Asperger's is h grave danger of being left alone and wlnerable ta scvere depnssion.

Aboiticsofniose with Asperger's May Compouud Roblems

Individuab with Asperger's ~ I C caught i n iaother biad, which 1 4 s t o ncgativt outcornes

for them. Iiiitially, tbcy prisent very wcU Thcy are oftcn highly inteIligent aiid exthmely
verbal, with cireas of acceptimai talent and aptitude. Their's i s a suWe socid disability. Teacher

Assistant A said that it was difficuit to descni Asperger's syndrome to ha fiiends, and that she

would teli them, m e sttdent t h I um worikingwith now, yoic c m ? reully tell right mvay thm he
h a -a dikzbility." Asperger's syndrome may not k diagmscd until the child reaches Junior High

School, or perhaps not at aii. Both Martin and Jane, the chdren of Parent A and Parent B,were
nnally diagnosed as having Asperger's syndrome in Grade 7. Parent B believes thet the late

diagnosis has compomdcd h a daughter's problems. She thinks that ifshe hed known about

Jane's disability when she was younger she wouid not have pushtd h a to @O=

in ways that

she couid not, and that she would have supported h a in ways that would have enhanced her
sense of self. Parent B expresses h a regrets: One of the things that I really regret about the Iuck of on ewij diagnosts ts thm I c m e d

Jme [sic) a lut of nedess Wering becmue she should'n'rhave ha al1 of those

correctiom and al1 of those instructions. It wcu too ntlcch. It was too muchfor anybo<Iy.
I mean you con? co~sstantly k telling a chfld wha's wrong with them And thut's what
you're doing in a sense* when y o u h gMng t

h ail those directions. And then expect

them tofiel g d about themetves. You have to dJow them somr tirne to be themselves,
you knowI their &tic

selves. Do p u now?

So thor's the one thing tha regret. And I regret t h about het teachers, too- I

13

thnut that J o n Isfc] has a lot ofpsycho~~gr'calproblems~ Wlton top of her Aspergeut

&orne,

because s k h m beenpushed Sryond what any prson am be pushed an her

serfeoncept h k e n erodcd

Since they do not stem t o have profouad disabilities, childien, adolesctllts, and duits
with Aspager's syndrome are ofkm I d without the supports that thcy quirt. Tbcy arr also

fiequently put in situations wbae they m o t wpe because they do eot have the social skills to
do so. Over expcaations, d t i n g i n rrpeatcdfailmes, also fccd into the downwerd spiral of

cnclhed self+steem and clinical depression. Tcachcr B emphasized how the appearance of

ability may actually be a detriment to individuals with Asperger's syndrome.

I believe thar the Asperger poplution i&probub& more nec& that the more autistic

population because theyfoolpeople. And they get into siruatr*011~ where they don 't have the skills to cope. Andyet the helpingprofissionnlsfeolthat these indhidwts me
capable a d do have the necessary ski11 to sort of survive wtthin the reguIat popuitztion

Parents may also undcrcmphasize the deficits of theu childm with Asperger's9putting them in
untenable situations, aaording to Tcachcr B .

M i parents see them as being more capable t h they actualg me. Not so much that
' or they &n 't see them as having a disubility, but they don 't see them us being Asporger s

they see them as being not pr inipcired as thid other graup. l%ere@re,they should be put on ripodestal. And imfommteiy8t h e j p t them into a categos, t k t she or he Lr not
capable offunctioning within, and theeefore, not always, but quite ofien,fdlure mises.
And then al1 kinds o f dzflmfties mise.

The capebilitits of individusis with Asperger's, prticuldy thch inteiligcnce, may a h

Iead t o depression, because tby can set that tbey do mt have du clcarly observable disabilities
of the more autistic popdation, such as rocking d cbanthg, y d tbey know 0ist they arc not part
of the mahtmm. Parent B adaiowldges that hcr daugbr, J m , knows tha she is differtnt.

She says that she tries t o encourage hcr daoghter t o acccpt hmcfas she i s and diat she tells Jane
that she is a good, beaufifid person. Howcva, Jane teplies, "Iharetha. Ihate t h And I hate

Godfor makng me this way. "

d bv D

Speech and Language Pathologist A belims that people wah Asperger's s y n d r o m e are
very intefigent and, herefore, very much aware that they are diffrent She States: '2nd 1think
they get ve?yfiustrated with themselves and very m m with thenrselves.." Both Adolescent A

and Adult A describeci the mger and fhstration that they have felt in their lives. Adolescent A

describes it as a toletance problem. H e says, ."I think 1have a tolerunce poblem. I lhaw a hord
tirne tolerating SMIcun g e t p e w ~ s t about y things." Adolescent A describes being v q
angry in Grade 3 and "~ushing" the classroom, den his ttachcr tceatcd him in a mamer that he

considered &air and unjust. Frank, Jane, David, and Ma~tin ali becorne vny angry and fhstrated when they do not pedorm d d d y et the level of their peers.

While they becorne very fhstrated when thcy are not pafomiing on a par with their peers,
-dents with Asperger's syndrome may reject teacher or tcacher aid support because they do not

15

want to be catcgorizod as Disabled or Special N & .

Tcachcr AsPstsnt A reportcd tba Frank

did not want to k ~eeaaspartofan AuSUmRogmm, andtbruhe iasUtedthathe attcndclass

without the supprt ofa t a c h a assistantt In my expaicacf, this was d

who did not want me s i -

y truc of David,

neiir him i n ciass, talking to bim whilc h was with his pers in the

Iibrary, or walking with him in the hallway. In orda to giw him the intensive support that he needed to attend rcpuiar classes, I had t o tutor him in an isoktcd, stvdy m m ,where he couid not
be observecl w o r k i a gw i t h a tcacher assistant David aiso avoids enterhg the Autism m m or

attending any special events or fini occasions that involve othcr members of the Autism Rogram.

Disabilities Are Lie-Liiting

Unfortunately, individuals with Asperger's s y n d r o m e do need intensive support to

succeed in maiiistream classroorns or in the w o r k p l a c e . When 1askd Teachcr B how he would

descnbe Li fe w i t h adolescents with Asperger's t o someone who has never eXpmenced it, he

replied:

Horrifing is one word thut cornes to mindsimply because this s the population t h is

sort of in a Catch 22 positim They don 't wunt to be s t e r e o ~ and d they don bvmtto
be clmped with indivduals with more severe neeh or m

e handicaps, because they

can visauarlly see the dzrerence between themselves and thatpopIation a d they bmv

that the regular papuIation stipmtizes aqy u n d of specfal grouping. A& of course, within out popufation the temu of "&ber room " and the "classof cron*es"and things
l i k thut @en corne up.

And then ryou 're un Asperger individual a d y o u 're in thor situation, ondyet

16

you wmit to scpmoe yourselflom tlim ~ih&ion anstep out on you own. p u 're out
t h aruideolng with o t k r Bdk putting &wn sonw o fp a i rpeers who me i n the clusrer

group. And t k n ais0 having tofindfir pairserftm thwe, w k e you don 't iuave the

~killssAnd qdre o@n Asperger individirrals, ugai, I use the t e m nord, because t k y
walk into situations tlud are so conunonpliace to tegulm sturjents, ondthey don 't krow
h m to read a sihrafiorr, d they kcome lmghing stock, cnd they becomes sort oj; in

some cases,the c h clown. Tragidy, the subtle nature o f the social disabilitics of people with Asperger's s y n d r o m e
may be We-limiting. Isolateci areas of aptitude and an appeamnce of average or above average

intelligence may pment others h m acknowledging the seriousness of their situation. 'Ihey, themselves, may teject a label that categorizes thcm as disabled. They are tnily caught in a Catch
22 situation that may lead to a lonely, friendiess Lifh chronic memployment, and mute

depression. It is very ciifficuit to find a way past the aansparrnt bubble that encapsulates them.

Because they have impaired social interaction skiiis, they have few, ifany, meaningfbi social relationships. However, they have the desire to comect with others and the awumess to

understand when they are king n j e c t e d and left alone. Since they do appear to be inteIligent and
capable, people overrsiimete their abilitits and do not gin them the supports that they rcquire.
At the same timc, people with Asperger's

s y n d r o m e may rejcct the sppport of professionas who

work with the autistic population becausc they can set the d i f f e ~ ~ cbetween ts thcmselves and
the more profoundly disabled manbers ofthe autistic population. Lack of support, npeated

social failures, and over expectations by signiscaut othcrs, combined with an awareness of their
ciifference fiom the dnsmm population and a desire to belong, puts those with Asperger's

17

syndrome in a homble oituatioa At tirna, it W Me-theamhg.

Teacher B nrprrsses his concem about the SCtiousness of thc Catch 22 position ofthose
with Asperger's syndrome.

rfpople &n Y see the signijlcance of the socid &Pcit of fndfvirhrals with Asperger s ' , it
cm k li#-threatening. Zhq are the-i

t k are more likeiy to get le# on their

mn, more likdy to have Mdice pressure put on them because of those isolated skills that

they have. People see the irolated skills and say, "But, oh tlrey 're so talented a d so Sijted! They don 'tsee the capocity of the whole persun.
r"

Teacher B bas serious concerns about the future ofDavid, the young man with Asperger's syndrome who rejected both Teacher Assistant A's and my mpport. UnfortunateLy, David
presents a classic example of the impossible situation that many individuals with Asperger's find

themselves in.

He 's got so fm to go. in a social contat, that thefiure does not look vety brightfor this
young mon The desire for social interaction is there, bat he p h e s

aside any kind of

helping had tiulf is offered to get him through social situations.

And he also has afmily that sort of misrepesent his &$kits in that merr They
give him afalse seme of secrcn*ty. ky are &O p h e d asicile whon he wmrts to step out

on his own. Wnen one is as Iacking in social insight as he Ls, yorc 'rejusi seting someb*
upfor failwe. Agairr, p u cm 'tfirce somebody to hy und leam

As well as puttiiig individuais with Asperger's at risk for acadcmic, caner,and social

failure, the social deficits of the disorder place them in grave physical danger. Parents A and B

18

are womed about the phpical safety of thek children, Parent B describes a homblc choice for
any parent.

The trials are srde&. m i the worst trihl o f dl. That's wlry she's mt in the house. Ami
why we couldh'r have her Zliv wwi u s ,~
C I I ~ we L S c~O

J ' O hep k r sde* We c d b 5

k e p herfiom m i n g out the doa.ncniing dmn the Sbeet. And d s o we wouin'r k e p

herfiom king violent in the house. Sonutimetimes, we even have a hard time when she's
visiting. S k gets r e d y ungry and wl thmw thirgs ag<ihrFt the wdl. We'oll,when she
was in the hoJptaI, she was threaening to kilZ herserfamime with o kn#.

And

threatening mainZy to k t herself: Main&, if's threats agaiwt hersey

Parent B is afraid her daughter may be sexually assauled or physidy beaten. She describeci
several incidents where inappropriate social behaviour put h n daughtet in phpical da~ger. In ail of these incidents Parent B or her spouse felt that they had to intervene t o pmtect their daughter.

Each incident began as a common everyday occurrence that was cscaiated to the point of extreme

danger by J d s inappropriate social khavi~ur~ Parent B d c d b t s one scenario:

She was in the pmk last summer. She thought t k s e two big grcvs, on a bike, were looking

ut herfinny. Anso she stop&

d d i d some obscene gesture. And they were ready to

harl offandhit her, you kww. Andmyhtrsbd[sic] M t o m n up mddo things to

keep her sole.

Rouas t o Mcaningful Social Intetaction Rcquired

The h o d c situation of those with Asperger's nseds to k addmsc. Parents,

professionais, and community members shouid be aware of the Scriousness of the social

interaction disability of those with Asperger's. A way through the transparent bubble is required.

19

Routes to rnemhgfU social interaction for those with Asperset's syndrome arr essential, so that they are no longer isolatcd and in physicai mdpsycbiogicai dangr. 'Ibcse taiented people

should be active, contributhg m e m h of tben commloutim. T b purpose o f f paper is to

examine ways t h adolescents with Asperger's synQome miy k includod i n social interaction

plans, and thus drawn out oftheir Uolating bubbles a d into mraimgfbi, l i f i c i n g relationships with members of thcn comm~ty.

BACKGROUND

Litarturr MCW: Asperger's Syndrome

Asperger's syndrome is a Pervasive Developmcntal Disotda which was f h t identifieci by

Hans Asperger i n 1944, wbm he iabeiied a group of childten who wae sociay Uoliiied and Who
displayed odd or cccentric behaviour as having "autistic psychopathy" (SzPtman, 1991, p . 81 ) .

Asperger's work gained littie attentionat the tirne since his researcbtaok place in N a z i ennany
and a similar disorder had been describecl by the American, Leo Kanaet, i n 1943. Leo Kanner's
work, describing a condition he d e d early infsntile autism, became the b i s of the world's

understanding of the autism. The stereotypicai pi-

of a chd with Kanner's autism was thM

of a nonverbal, totally sociaiiy withdrawn child rocking i n a corner. The actuai teim, "Asperger's

syndrome'' was nrst used by Loma Wmg (198 1) a s a descriptive diagnosis for those people with
autism who did not fit the dent, aloof Kaands stere~type (Happy1995, p.83).

By the late

1980s resemhers, Burd & Ketbesbian (1987), Gillberg & Gillberg (1989)' Szamari, Bmnner, &

Nagy (1989), and Tantam (1988)' were beginning t o list criteria for Asperger's syndrome

(Happ6, pp. 84-87). The translation of Hans Asperger's original dissertation into English by Uta

Frith (1991), eccompanied by hcr rwcarch aad publications added t o the understanding of

Asperger's intcrpreation ofautism. F W y , approximately fifty years a f k Asperger finit

described the disorder, Asperger's syndrome was listed as a distinct disorder in both the tenth revision of die
rganization (1992) and the fourth edition of the -

@CD-IO) of the Wodd H d t h

..

Djsorders @SM-IV) of the American Psychiatrie Association (1 9 9 4 ) .

Since Aspcrget's +me

has oniy reccntiy gaincd attention, much ofthe mcarch that

bas been conducted i n this syndrome aad the M'kentiationofAspcrgds syncome h m autism,
other Pervasive Deveiopmcntal Disordcrs ( P D & ) , d otha disordars. Rior to the 1994 publication of the DSM-IV, the closest descriptionto Asperger's syndrome in the

..

would have VC the catcgory Pavasive Dmlopmental

Disorder Not Otheniyjse Specified (PDD-NOS). The cikgnosis pcrvasive developmental disorder
(PDD) is a bmad classification for individuais who prrscnt w i t h a triad of irnpaiimcnts, hcludhg "reciprocaisocial interaction, v d d and nonvabai cornmukation, and d c t e d range of

imaginative activities" (Szatmmi, 1991, p 82). Autism i s considezod a subgtoup within the PDD
spectnun and the diagwsis PDD-NOSwas aven to people who did not meet ali of the criteria

for autism, including people who would be diagnoseci as having Asperger's syndrome today. Presently, thm is stiil considerab1e debate about whether Asperger's syndromeshould be considered a distinct developmental disabii within the PDD spetnrm or a fom of higher fnctioning autism.
As wel as king confbse with othei fomis of PDD,Asperger's syndrome hes also ken

misdiagnosed as: Obwssive-Compulsive Disorda, G c n d Anxicty Disorder, Schizoid Personality Disorder, Childhood Scbphtenia, Attention Deficit Disorder, Mental IRetardation,
Developmental Language Disorder, Sematic-RsgmeticDisorder, or Lcanling Disability. in a
study by Fine, Bartolucci, G i n s b e r g ,and Suitmari (1991) the mearchers discovered that

previous diagnoses for their group of 28 subjects with Asperger's Syndrome included:

22

"hyperactivity, anxiety disorder, lemhg disability, elcctive mutism, batderhe schizophrenia,

obsessive-compulsivt disorder, and adjUStrnCIIt d o n "(p. 774). Sincc Asperger's syndrome is

a subtle disab'ility, iagnosis d diffcfcntiationfbm otha d h c k s continues to k p r o b l d c .

~etctltiation ofAsperger's autism wiKamer's autism has been the focus of much of
the research in this arca. Thcm are a number of m d c a b l t similaritics and coincidences in the

research of these two men,leaing to the co11clusionby some -hem

(Frith, 1991; Voikmar,

Paul, & Cohen, 1985) that Kanner and Asperger wcre describing the same disorder and by other

researchers (Gillberg & Gillberg, 1989; Szatmari, 1991; Tantam, 1991; Wmg, 1981,1991) that
they wen describing subgroups within an autistic continuum. The terni autistic was first coined
by Bleuler (1908). who used the word (hm the Greck "autos"rneaning "self') to describe the

social withdrawai seen in adults with sckopbrenia (HappC, 1995, p. 1 1). Worlang independentfy, both Asperger and Kamer chose to use the word autistic t o label the population
they were studying. They also both regarded the social handicap of people with autism to be

pervasive, with Kanncr (1943) ralling it 'innate'' and Asperger (1944) saying it was
'bconstitutional"@hpp,p. 11). Poor eye contact, stcrcotypts of word and movcment, marked

resistance to change, isolatcd spccial intacsro, and an attractive -CC

all a p p d in the

diagnostic description of the autistic disordcr tbat both mai wac invtstigating (HapH, p. 11).

They also both diffetc~ltiate autism h m schizophrcnia by s a id not hallucinate, appcared abnomial h m their earliest y ,

that their clients with autism

and showed impmvemcnt rather

than deterioration (Happ, p. 1 1). Intcrestingly, Asperger and Kanntt s h e d the obscwation that

23
the parents of their autistic clients o h showcd W a r autistic traits, such as "social withdrawd
or incornpetence, obstssive dclight in mutine, and the p d t of spccial intatsts t o the exclusion

of all else*(HappC,p . 1 1 ) .

Despite the sigdicmt similarities in thcir diagnostic descriptions, Asperger and Kanm

a h appeared t o disagme in thrcc crucial areas of diagnosh, pviding the opporRnijty for 0thresearchers (Van KreveIcn, 1971) t o conclude that they were descn'bing distinct disorders
(Happ, 1995, p. 92). The quality and the timing of the development of language in autistic children proved to be the most eontroversial diagnostic area In thtir initial papers Kanner o the emphasized the absence of language in his patients, while Asperger drew attentiont
amazing vocabulary of some of his subjects. Three of Kaands eleven patients never spoke and

he concluded that the others were not actualiy using language t o commUIca!e. Kama (1943)
stated, "Innone

... has language ... served to convey meaningn(Happ6,1995, p. 12)and he

used examples of "echolalia, prowun reversai, and ifliculties in genaalizing word meanings"
(Fritb, 1991, p .1 0 )to show the meruiingIess of the language that was used. AU four of the
patients Asperger described in his d i d o n spoke fluetltly, with Asperger (1944) describing
the six t o nine-yeatold as speaking "lilrc little adults"@a@,

p . 1 2 ) and remarking on theu

clever-soundinglmguage, with its advanced v d -

Iind hvented words. Asperger

(1944/1991) said o f bis subjea: They arc able t o express their own original expcrience in a

linguisticallyoriginal fonn. This seen in the choie of u n d words which one would suppose
to be totally outside the sphere of these chilclren"@p. 70-71).

Although Asperger wmrnented on the musual, and often early development of

24

vocabulary of his subjecs, he also noted the abnondties that occind in the language of

chilchen with autistic psychopathy, stating tat ianguage usage was a useful means of diagnosis.
He describeci peculintics in the hgmge of his subjccts such as:

Sometimts tbe voie is soft and fr away, sarnetimcs it SOU&

&incd and nspcil, but

sometimes it i s too shrii and carsplittiug. In yct other cases, the voice h n e s on in a
siag-song and does not evcn pd o m at the end of a sentence. Sometimes spach is

over-moduiattd and som&likc exaggetatc verse-speaking. H o -

many possibilities

there are, they ail have one thhg i n oommon: the ianguage ftels urmetiaal,o h Like a
caricature, which provokes ridicule in the naive listena. (Asperger, 1944/1991, p. 70)

In a footnote in h a translation of Asperger's dhatation Fnth (1991) explains that "Asperger's

descriptive phrase "taking like an adult" suggests oddness over and above pecociiw (p. 39).

Wig (1981) ais0 points out the oddntss of the speech of children with Asperger's s y n d r o m e ,
describing it as grammatidy perfkct, but with an abnormal, pcdantic content, oAcn consishg
of lengthy speeches about a fkvourite subject (HappC, 1995, p. 116).

i n acidition to pecuiiarities in the vetbal cornpanent of speech of his s u b j ~Asprger ,

noted an oddness in the non-verbal aspects of communkation. Although a of his subjects spoke
fluently, he noted a b n o d t i e s in the^ communicaiion, eapccidy i n the use of g a to~establish ~ non-verbal contact in a conversation H e obsaved an abnormalityof gaze, so that "hardly ever does their gance fix bngbtly on a particuiar object as a si- of livciy attention and contact"
(Asperger, 1944/1991, p. 68) and commentcd that this pcculiarity in cye contact was @cdarly

evident when they w e r e in w n v d o n with others.

Glance does not meet glance as it does when uni@ of conversational contact is

25

estabiishd Wben w e talk t o somconc, we do not only 'answer' with words, but w e

'ansm'with our look, oiir tonc of voie, and the whole cxprrssive play of fecc and
bands. A large part ofsocial xclationships is conductcd through ye gaze, but s u c h

relationships are of no intarrt t o the d s t i c chilci. @ . 69)

Considering thc oddness thad Aspaea descn'bad in the use of lmswge and non-vabai aspects of

communication, one could argue tbad t h e i s m e n t ktwrenAsperger and Kanner i n the

language realm, since both are describing profoinid dif][iculties i n communiC8tion- However, many people have understood Kanner as d d b i n g a complete lack of language and Asperger as
describing a precocious, odd use oflanguage.

Secondly, Asperger and Kanner disagr& about th motor skls of their subjects.
Kanner (1943) noted the rn811uai dexterity thet his subjects used to spin objects and to fhd
success on the Seguin fonn board and concludecl that they wae capable of "excellent,pinposefl

and intelligent relations to objectsn(H8ppe,1995, p. 12). Conversely, Asperger (1944) reported

both clumsy, poor gmss motor coordination and pmblems w i t h fine motor skills, such as writing,

in his subjects, coacluding that "theessential a b n o d t y in autism i s a disnubance ofthe lively

relationship with the whole environment"(HappC, p. 12).

Finally, Asperger and Kanner disagrrcd on the 1 g -

style of their subjects, with

Kanner promoting rote launhg as the p r c f d style of his subjccts and Asperger (1944)

endorsing the use of the child's own lcaming systcm ( " k t whm the chd can pduw

spontaneously")and suggesting that they are "absactthinkcrsn(Happt, p. 12). Asperset

seemed to be Muenced by his subjects' original language, theh stubom insistace on following

their own interests, and theu unusuai methods in intellecnial problem-solving whcn he advocated

26

leting autidc children foliow their own lesmiDg systems. Indeed, he d

e d on the ifi'idty

that was encountcred when sorncooe tried to tmch a cbild with aUnCstic psychopthy, sayhg that:

''They are simpiy not set t o a s s m k e aid lcmn an duit's knowledgen(Asperger, 1944/1991, p.
O O

70). Although he mted the r o t e leaming abilities of his subjccts, Asperger was most imprcssed

with what he describeci as tbcir original thought d he unphasizcd %ch, original language
production" such as: " ' M y sleq today was long but t h i a . ' or '1CM? do this o d y , only headily*'

or '1 don? like the blinding sua, nor the darlr, but best 1iike the mottled shadow.'" (p. 71), to
prove their intellectual capabilities. Thus, the impression was given that Asperger was studying a

population that was capable of intektuai originality, while Kanner was describing a group that
required rote learning.

Both Kanner and Asperger, like most mearchers who bave studied autism, used their
clinid experiences with this population t o develop diagnostic criteria for the disorder. Over
time, the emphasis of their diagnostic criteria changed Kanaer's first paper highghted the

following fatures as important aspects of autism:

1. extrane autistic doneness

2. anxiously obses~ive desite for the psavation of sameness

3. excellent rote memoy
4. delayed echolalia

5. over sensitivity to stimuli

6. limitation in the varkty of spontancous advity

7. good cognitive potentialities

S. highly intelligent families (HappC, 1995, p. 1O)

27

Later, Kanner decided that "garane isoiation and the obsesDive insistence on the preservation of
sameaess" (Kamis & Eisenberg 1956) wat th key clanents of autsm and bat the other
feanixes that he had iisted earlier wat e i t k secoduy t o or causeci by thcse two core conditions

(Happ, p. 10). Kairads cmphasii on aloneness fonncd the ksis of the world's un&standing of

autism. Autistic chidren mrc scen as beautW, intciligentc b i l h tragidy locked in dence
fiom the world.
Asperger's concept ofautistic psychopahy i n cbildmia

h changed subtly, over the.

When he frst described autism, Asperger uscd case studies and bis descriptions and analysis of
these case studies to present sutistic psychopathy to the world. He did not present a sho&

concise list of criteria that people could eady use t o identify autisn. His interest and emphasis
at the time of his d i d o n influenced the content of his paper and aiso subsequent

interpretations of his work. For example, Asperger (1944/1991) stated that autism wuld accur in children of ali inte11ectual ranges: "The d s t i c personaty is catainly not only found in the
intellectualiy able. It also occurs in the less able, ewn in children with severe mental

retardation" (pp*58-59). However, the cmphasis in his paper on originality of thought in

children with autistic psychopathy, obscund his statement about autissn i n Mentally Retarded

chiIdren. H e setmed t o be particulariy intacstcd in those who wac inte11ectuaUy giffcd, and ds
interest showed in the M o n of his o n .

Frith (1991) crcplains in a footnote, "The

important insight that autism can occur ai aii levels of intellcctuai abiiity, inciuding the

subnormai range of intelligence, bas oftm b e n overlooked, even by Asperger himseif in his later papers" (p. 59). Asperger's emphasis and interest in an individu81with autism with higher
intellectual abilities and readers' iaterpretatiom ofthat emphasis have lead to the current

stemtypical image ofpeople with Asperger's syaQome as k g : "socially inept but ofien sacidy interest& cutidatc yet stmngtly bloquent, gauche riid imprsctical, md spccialists in

musuai fields"(Frith, pp. 11-12).

Asperger's

ofautism did not becornt known to the world for maay y -

alter Kanner's description of d o o f , dent childrcnkcemc the prototype for autism. However,

clinicians such as Loma Wmg were mcountcring individuais with autism who did not fit into the
stereotypicai, isolated, mode1 of Kamids autism. Liitially, W q dewloped a subclassification

for autisn to account for the variation in the autistic population. Ha subclassificationwas based
on the de-

of social withdrawal that was displaycd by the individuais with autism and

included three subtypes within the autistic spcctnmi: "aloof", w v e " , and "active but odd".
Those in the aldof group would best fit U

s description of autism, those in the "active but

od" group w e r e more typical of Asperger's description of autism, and those in the passive group
had elements of both desmiptions. Later, wanting mgnition for these "moreablenindividuals in the "passive"and "active but odd groups", Wing (198 1) w a s the f h tt o use the label

"Asperger'ssyndroment o identifvthis verbal, txtrtmtly socially odd population. Wing listed six diagnostic cntma for Asperger's syndrome bascd on hm intqmtaion of Asperger's 1944 description:
1. Speech* dclay, difficulty using pronouns consctly, content odd, pedantic, ofien

lengthy aratory about favourite subject

2. Nonverbal commuaication-littief~cial expression, monotone voice, inappropriate

gesture, poor c o m ~ o of notbers expressions and gahins

3. Social interactions-iack of ability t o u&rstmi and use the niks goveming social

behaviour, naive and pcculiiir S0ci.lkhviwr

4. Rcsistancc t o change-oftcncnjoy spimiine objects, intcnstly atached ta particdm

possessions, uiihsppyawayhmfsmiarpias 5. Motor coordination-gaitand posture odd, p s s movcmcnts clumsy, poor at -es
involving motor skills, sometimes poor fine motor, such as in miting or drawing
6. Skilis and intctests-exceiitllt rote memory, intmsely intaested in one or two subjects,

absorb ctsabout subject but have Little lpasp of the mcaniiig of the f a a ~ @p. 116117)

Wing modifieci the description of Asperger's autism that she had extracted h m
Asperger's dissecfafion, making three changes which tefiected the knowlege she had gained

from inte~ewing parents about the developmental history of the clients she had identifiecl as
having Asperger's syndrome. Although only one of the four children deScnbed in his dissertation

taked kfore h walked, Asperger cmphasized that his subjects spokc kfore they waiked and

that their linguistic skills were "highly sophisticated.* Whg (1981) d i s c o v d a variety of early
developmental discrcpancies betmaithe reportecl histories of 34 of h a clients with Asperger's

syndrome and Asperger's account @. 117). Wing explains the dkcpancies between het cases and Asperger's account of anguage and carly dcvelopment:

SlightIy less than half of the pttsent author's mon typicai cases of Asperger's syndrome
were walLiag at the usual age, but were slow t o tdlc. Haiftalked noxmaily but wete slow

to wallg and one both walktd aud talked et the a<pc*cd times. Despite the eventual gwd

30
use of grammata n d a large vocabuky, carrful obsavPtion ova a long enou@ perio of

time discloses that the content of speech i s impovauhed an much of it i s wpied

inappropriately h m athapeople or books. Tbe
king leand by rote.

uscd givcs the impression of

The mauhgs ofl o n g and obsMe w o i 6 may k known, but not

thoseofwordsusedevayday. (p. 117)

Secondly, W w n ig (1981) found evidcnce that the parcnts of hcr clients with m e r ' s

syndrome had noticed an u n d la& of social tesponsiveness i n thtir childrcn at a very early
age. Asperger (194M991) had reported that the symptoms of autism are prcsent h

m the

second year of Me: Trom the second y -

of We we h d alnady the characteristic f a t u r e s

which remain umisthble and constant thioughout the whole lifk-span" @. 67). However,
many people had the impression that early detection of Asperger's synQome was vay Ecuit

Frith (1991) states in a footwte to Asperger's comment about finding autistic fatures in twoyear-olds: "This important s t a t e m e n t , thst symptoms are prescnt k mthe second year of He, is
so well buried i n the text that it has o

h been ovalooked. hsteitd the belief has persisted that

Asperger's cases show nonnal developmmt, cspecially in lariguaee, up t o thne y ,

or later"

@. 67). Wmg found that during carcfid intcnriewing the parents of h a clients reporteci such

autistic feetures in theu babies and toddkrs as: "limitai Wbling, no sharing of toys or

interesthg evmts in the mviroment with parents or visitors, and a gencral lack of the intense
urge to communiate in babble, gestiae, movcmcnt,d e s , laughta. and eventually speech that

characterizes the normal kmby and W e r " ( p . 117). Finally, Wiig (198 1) di@

with Asperger's belief that individuals with Asperger's

syndrome are capable of "originatyaad aeativity in heir chosen field"(p. 118). uistead Wing

believes that thc thought pocess is cxficmtly W ,with the appcarabcc ofcxceptiond
cognitive abilities b e i iniPcciiiatelypaceivcdkcause oftcir unusuai appmach to intellCCtual

problem-solving. Wiii$ prrsclils ba argument:

It would k more tnu to say thit th& thought procea#s arc confincd to a m w ,

pedantic, literal, but logid, chaia of reasoning. The musual @ t y

ofthch approach

arises h m the tcndency t o select, as the m

g point for the logicai chain, some aspect

of a subject that would k udiktly to occur to a normal pason who has absorbed the

attitudes current in his culture. Usually the rrsult i s inapproprhte7but once in a while it
gives new insight into a problem. ( p . 118)

Wing's descriptive reinaoduction of Asperger's type autism, accompanied by her own

clinical observations7gained attentionand provideci a hasis for the identificationof this fom of
autim. However, the syndrome, as Wmg describecl it, was broader than the prototype of ciever-

sounding, verbally jmcocious, socially odd cbildren that many people have inteqmted Asperger

as describing. By de-ernphasizingthe cl~msy~ motor impairmats and modifLiog the d d p t i o n of language and early development, W ' i was perhaps includiag individuais with a form of
higher f'wictioning, Kanner's-type autirni in hcr diagnostic category- n the other han& she may
have been including individuals that should have kmconsidd in the Asperger's category.

Whether Wig's 1981 description was accurate or not, it was the prbuy b i s for frihae descriptions of Aspcrget's syndromeand for clinid diagnosis of Asperger's s y n d r o m e .

By the end of the 1980s' a number of researchers were listing diagnostic criteria for

32
Asperger's syndrome,bascd on Wmg's 1981 descriptionof Aspefget's autism,and a amilar
pronle was kginning to develop. Burd and Kerkshian(1987) gave five f

m as a

descriptionof Aspcrseis synrome:

1. v h - - t i c ,

rUrrotyped apmsodic

2. impeind nonverbai communication

3. social intaadion-pcculiu, Iacks empetby

4. c i r c d b e d interests-rcpetitive activitics or savant sLls
5. movements-clumsy o r stehotypcd @app, 1995, p. 8485)

Tantam (1988) in his studies of ad& with Asperger's syndrome n

o the~ same five core

features (Happ, p. 85). Gillberg and Gillberg (1989) have giwn a detailed Est of six criteria that

they have found useful in diagnosing Aspager's syndrome (Appendix A ) . Gillberg d

Gillberg's list wntains the same five key fcaam~ as tbat of Burd, Kerbeshian, and Tantam, with

the addition of the criterion describhg how routine i s imposed on all aspects oftheir lives: "A stereotyped way of trying to introduce and impose mutines or the pariidtir interest in ail or
almost aU aspects of o r *

Mie" (Gillkg & GiIlberg, 1989, p.632). Similarly, S&mai,

Bremner, and Nagy (1989) proposed a list of critcria to help identify Asperger's syndrome that
included the descriptors: 'solitaqt, impaimi social M o n , im@d nonvabal

communication, odd speech, and docs not meet DSM-III-R critctia for Autistic Disorder" (p.
558) (Appendix B ) . Although the diagnostic critcria mong the rcsearchcrs difficrs slightly, each

list contains a description of musual, odd speech and a difficuity with social interaction. The question remaias whether these aiteria are aiough to diffrentiateAsperger's syndrome as a
distinct disability.

Uta Frith provideci clinicians with an Engiish tcauslation ofAsperger's origmal

d i s S e t i 8 f i o n a d her 0 1 1 s

ofbuwork in 1991. F a ' s ciirrful shdy of Asperger's work

and her own ciinicai piadcc have l d k t 0 concIde thia Aspagcr and Kannet werr
dedbing the sune type of disaled chiid @rith, 1 9 9 1 ,p. 6). She specuiatcs that pahsps the
slight diffef~~lces i n their sccormts of autisin wa dut t o the population tbat mch o fthcm w m
studying, suggesting that, %e possi'bility t b thc prototype Kamer had in mind was yoimger-

with delayed and markedly deviant language acquisition-wss, i n short, a chiid with a more
blatant and sevm communication disorder"@. 1 1 ) . Frith prcscnts supcrior language abiities as

the prime diagnostic tool for idcntifyng individu& with Asperger's syndrome-type autism. She
says that "theytend t o speak flucntiy by the the they an five, even iftbeir language

development was slow to begh w i t h ,and mnif theu language i s noticeably off in its use for
communication" @. 3). She acknowlcdgesthat using language ability as the prime diagnostic

tool may lead to a change in diagnosis f o r certain individuais, who present as profoundly autistic
in early childhood, but Who kgin t o use languagt fiucntly as they mature. Frith mggests thet

Asperger was describing a variant of cwtism d thiit bis case descriptions s h o u l d k used in the overall understanding o fautism.

Aspcrger (1994/1991) introduccs his o n

on autistic psychopathy by stating that

"This distwbance rcsults i n sevm and c b a c t a W c difficulties o fsocial intcgration. In many

cases the social pmblaas are so profound tbat they ovcrshaow cverything else" (p. 37). H e then
goes on to describe four boys who are unahle to relate t o thek parents, play wth their peers, or

foilow the social des i n school. Asperger describes autism as a LCdisturbance of lively

nlationsbip with the whole e n v i r o m @. 74) which hiiows normal interaction with people and objects thtoughout the afIlictcd individual's lifitirne. Asperger says that aithoughthe problems that occur may change as the individuai matms, t&y arc a bascd on a bamcntal
inability to relate to the ~11vironmat.This insbility to relate to th environment is manifesmi by
the following problans a t diffkrent stages of development: r i i esrly childhd th-

are the

ditnculties in learning simple practical slrls and in social aapton. These dBculties arise out

of the same distrabance which a t school age ause learning and conduct problems, in adolescence
job and perfommce problems, and in aduithood social and marital wnflictsn(p. 68). Asperger
states that "the nature of these children is m e a l e d most clearly in theh behaviour towards other

people" @. 77). He then goes on to describe how the highly veral childm who he was
describing w e r e unable to successfiilly interact with others and were not able to imderstand others' feelings or leam by intuition.

With unrgnny certainty, the children manage t o do whatever is the most unpleasant or

hrirtful in a particular situation. Howeva, since th& emotionality is poorly developed,

thcy cannot sense how much they hurt othas, cithcr physidy, as in the casc of yomger

siblings, or mentay, as in the case of parents.

... They can lcen ody with the help of

elabrate rules and laws and arc unshle t o pick up ail those things thet 0 t h childm
acquirt onhirslly in rmconscious imitation of adults. (p. 77)

Clearly, Asperger was describing social intctaction as the prime deficit of sutism end also that

abnormaiities in social interaction could be usad as a key diagnostic tool.

Clinicians have uscd the adnmely musual,ocl, anci totaliy inappropriatcsocial interaction of individuah with Aspc~er's syrwiromt b identi@ the disordaimd to diffef~~ltiete it

h m autism. Thcy differcnn'att individuais with autsm d Asperger's syndrome by paceiving

thox with a
h as not wanting to date to o k and those with Asperger's as not knowing

how to relate to 0 t h ~ The . m u s u a i~

tto socid s interaction that individuah with

Asperger's m y display form part of a clinician's critgia far the diagnosis of Asperger's
syndrome. This social interactiondiffidty i s espccially evident in attcmpted interactions w i t h

childhood peers. Clinicians have noticai that it is in the area of recipmcal interaction w i t h their peers that children with Asperger's encounter the most di5cuity aad show the most impainnent.
A child with Asperger's synchme may be able to relate to an adult in an onean-one situation,

where the focus i s on the chd and his or her interests. This may be because an addt may
compensate to allow for idiosyncrasies of the child's conversation. H o w e v e r ,as soon as more
people are introduce to the situation or the focus changes to the aduits' world, the socid

impairments of Asperger's becorne evident. It appeam that the child with Asperger's syndrome
has great difficdty with modifying his or her sociai behaviour t o the deman& of the

environment. Szatmari (1991) says t h t thcy me always "outof contcxtn(p. 82).

Although the child with Aspagcr's may be cxtrcmely articuiate and bave a large
vocabuiary, there appears t o be somethmg not @te right in his or h a attcmpts t o comrnunicate.
Szatman (1991)explains this impairmeat i n communicationby stating that a child with
Asperger's experiences: "aprofound difficulty in the pragmatcs of social communication, that is

in the creation of social meaning through communication"(p. 82). Wmg (1981)describes the

impairment of two-way social interaction:

The pmblem cirires aOm a k k ofabiiityto undasEmd rad use the niles govcming social
behaviour. These niles a unwtitten d mstatd, cornplex, cunstmy changing, and
effect speech, gesturcypostiin,movawnf yc ooat4d.cboice of clothing, pmximity to

o k , and many otha aspects ofkhaviour. Their sociai kbaviour is naive and pecuiiar.
They do not have the intuitive hiowledge of how t o adapt their appmachts and rtsponses
to fit inwith the n e &

and pcrsonalities of othcrs. (p. 116)

AccordiDg to Szatmari, some of the khaviours that indicate dias a child with Asperger's i s having difficuiy with the pragmatics of social communication are:
1. extrrme dBculty in initiating and rnisteming a conversation

..

2. a use of language as a means to a partidar ancrete end

3. speech offen characterizedby a lack of inflection or by u n d placement of inflection

in a sentence
4. conversation that is often: tangentid, offthe point, or circmstantial

5. conversaton that k k s whesion d provides few linlrs among thoughts

6. an inability t o use social conto provide appropriate and useful Monnation to the

iistener (p. 83)

These bebavioum provide the observer with an hpmsion that something is not quite
right in the conversation of the child with Aspagcis. Language is bcmg used and conversation

is taking place, but somehow fiail communidon i s not taking place. This lack of recipmcal

conversation and wmmunication becornes especially enQat in situations where communication

with peers is attempted and the pem expccts the give and take of a normal conversation to take

place. When a child with Aspcrgct's hiils to use ianguage to commmicatc in a rrcipocal

fasbion, he or she has a great deai of dSiculty with establWbing social interactions and evcn

minimal pecr reiationsbips. TIW sociai interaction deficit becdmcs particuidypainful at

adolescence, whcn thcre i s a simng e t oh t c r a c t with o n e ' s pcas.

Some rcsearchers (Gillberg & GUa& 1989; S

, 1991; Tantam, 1991; Wing 1981,

1991) identm Asperger's syndrome as a subtle fonn of autism, with rccipmcal social

interactions with peers providing the most difficuity. The degree of social aloofiiess semis to

improve in some individuais with autism as they mature. Wmg (1981) reported that some of the
children that se classineci as king "aloof' as yomg children attempted t o intcract with others as
they became older, so that she would xeclassifi/them as 'Wive but odd? Otber researchers
(Gillberg, 1991; Gillberg & Steffenburg, 1987; Wing, 1981,1988) have reported chdren

diagnosed in early childhd with autism, Who were later diagnosed as h a *

Asperger's

syndrome (Ozonoff,Rogers, & Pennington, 1991, p. 1 1 17). This change in diagnosis seems to

indicate that change and p w t h is possible in those with autism and that Qlperience and

maniration may lcad t o fewcr symptoms of Kannds iype autism and thus the diagnosis of
Asperger's syndrome. H o ,

ifit i s possible for those with Kanncis autism t o becorne less

aloof as they mature and to becorne more like the Aspcrgcr's popuiation, it would semi that

Kanner's autism and Asperger's syndrome arc two manifiestations of the same disotder and that the differences nporte betweenthem may k diffctc~lces in mahiration and development. Frith's (1991) assertion that Asperger and Kanner were descrjbing the same disorder wodd be

38
correct, This would sam t o indiate tbat thwe with Asperger's en less mtistic, les rcmoved

fkomthe wor1dthanthosewithIbnnds~ kinisethyhawleamcdwsy~tobcginto approach otbas. Ifthis i s tnie A s p g d s syadromc sbwld k cons id^ a description of the
high end of an autisfic contiriuum.

Addhg t o the CYIdcnct that Aspagct's syndrome and Kmmds a u t h may be the

diffrent de-

of autistic severity and di&rrnt mnSkstations of the same disorda are the

family studies which have identifieci the co-acciarmeeof Aspergds syndrome and autism.

B o j

(1988) studied a M

y whm four sons and th& father a l l displayed a variety of PDD

symptoms h m mild Asperger'slike traits, t o Asperger's syndrome, t o scvere Kanner-type

autism, where the child was thought t o be mtde bcfore the age of 30 rnontbs (p. 380).

;i

Burgaine and Wmg (1983) noted triplets d o s e autism nmged b m Asperger's type t o Kannertype. Eisenberg (1957). iike both b e r and Asperger, notai the autistic-liketraits in the

l i d!

i i

parents of his clients, rrporting that children with autism had Asprseis syndrome-like W e r s
(Happ, 1995, p. 91). DeLong and Dwyer (1988) stuied 929 1st and 2nd degrce relatives of

t E

chiidmi w i t h autism and discovered a bigh incidence of Aspcrgeis syndrome in fiamilies of

autistic children w i t h IQs of grrata than 70, but mt i n the fhmiiics of morr inteiicctuaily

handicapped cbdren (Happ, p. 91). F i y , Gillberg (1991) prtsentecl six family studits that

showed people with autism, Asperger's syndrome, and Asperger's-likt traits Uithe same tmily.

Researchers have attempted the diflcicuit ta& of diffrentiating Kanner's autism and
Asperger's syndrome in individuais who an hi&-finictioning. Accordhg to IUin, VoUanar,

39
Sparrow, Cicchttti*and Rode (1995) Asperger's syndrome has becn incoasistently identified
by ciinicians, "same o f whom bave employai it b d e r to d s t i c persans with bigha levels of

intelligence, amilts with udism,or m m as a bmmk tam for a "aypicaiW childrcn who do not

fulnll citeria fm autism" (p. 1128). Part of the diflcuity of diagnosis i si n &finhg the tcnn
nhi&-finicti~nhg." Ifhigh-fnctioning i s considering king aie t o qpmach othap and king

less sociaiiy aloof, the social interaction critaion can k used to M i t i a t e the two disorciers
and everyone who was identifid as being "high-bctioning" wodd also be identified as havhg
Aspergefs syndrome. Asperger's syndrome would becorne a "catch aUW diagnostic category that

would include individuais who because of manPation, leaming, or individdty do not meet the

criteria for autism.

However, the g e d y accepted definition of hi&-fiaidonhg autisn (HFA) is "autism

associated with o v d normal intelligence''

et al., 1995, p. 1128). Szatmari and Jones

(1991) reviewed the reseai~h on I Q and genetics aad concluded the "the I Q of an autistic chiid
does not index severity of autism"(Happd, 1995, p. 88). This would seem to indicate that thm

are highly intefigent individuals with Kanuet's type autiSm. who are extmnely autistic and aloof,

and that there are individuais with low inteiIigence, who are mildly autistic, ((active but odd",
with an Asperger's type disorder. Although Kamer's autism has kenassociated with low

intelligence and social withdrawal and Asperget's m e

ha9 ken8ssociated with high

inteiligence and bitam sochi appmch, both m m believed that the authtic disorder that they
described could s u r at either end of the intcuigaice range. Kanner remarked on the inteiligence potentiat of his subjects (Happ* 1995, p. 10) and Asperger insisted that the pattern
of irnpairments that he described could occur i n chiidren of low inteliigence ( H a p p , p . 85;

Asperger, WWl991, pp. 58-59).

Researchcn have kgunt o compare Wviduais who have ban giwn the highfiuictioning euhistic (HFA)h l a d thorc who hve kcnlabelid Asperger's o detenniae if
tbeycenbcdinaartiittcd.niae arc conflicting&ts

h m this rrsearch. Some rescambers

(Ownoff, Rogen, and P m n , 1991) klim that tbycan diffcrclltiiate HFA and Asperger's,
while 0th-

(Ghaziuddiii, Butler, Tsai, & bazidh, 1994) conclude that t h a i s not Mcicnt

evidence to Mertatiate the two disordcts* Part o f the problem with this nsesrch is how the
subjects of the march wae givai the diagnostic kbel ofAsperger's or HFA initiaily.

Researchers (w-mg, 1991) have found that they can change the diagnosis of their subjects h m
HFA to Asperger's or Asperger's to HFA by changing the diagnostic critena that i s used. Thus,

some of the research designeci to diffkrentiate Asperger's and HFA cippears to be rather circuiar

and inconclusive.
Attempts to dinercatiate Asperger's and HFA have focused on the dinerences in the

clinical criteria for diagnosis ofthe two disordcrs. For example, althou& Gbaziuddin et al.
(1 994) did not find signifiant diffkrmcts m e e n thtir subjects wit Asperger's and their
subjects with HFA,they used the rrpeatodchical acwuuts of cliimsintss in individuah with
Asperger's as the b i s for t h & rcsuuch. Cliaically, some pfssionals paceive nght brain

deficits in those with Asperger's and left brain deficits in those with d m .They point to the

language stmgths and the motor clumsiness o f those w i t h Aspastt's and the language

weakness and motor strengtbs ofUuwe w i t h autism as proof of this hemispheric W e t e a c e .

Some researchers (Volkmar

a al., 1994), who have used the Weschler Intelligence Scale for

Children (WISC) and Wcschler Aduit Intelligence Scale (WAIS) (Weschlcr, 1994,1981) as tools

41

t o anaiyze the Mrences bctwcen HFA and Asperger's, klieve thst those with Asperger's show

a higher Verbal vasus Petfotm~lll~t score, while those autism show a higer Pd-

vasus

Vabal score (IUin a ai., 1995, p. 1129).

OU)IK)&

Rogers, and P d g t o n (1991) concluded

that those with HFA and Aspe%a's can k d i f f i 'Ibe d t s oftheir stuciy r#an to
indiCate a left bain sthngth for thcir Sut,jdcts with Asperger's an a right brah strength for their

subjects with H F & with only the hi@-Mtming rutistic p u p showing deficiencies in thcory

of mind and vabal mcmory, and only th Aspcrgefs syndromegmup showing deficiencies in emotioaal perception (p. 1115). ther mearchers (Van Kmlcn, 1971) have note that their
subjects couid k diffkentiated on the basis of laiigusge abilities, motor coordination, and degcee of social interaction, and concludeci that Aspaser was &scrib0i a separate disorder (Happ,
1995, p. 92).

Despite inconclusive research & t s

in the ettniipt to Metentiate HFA and Asperger'sy

practising clkiicians tend to use the indicationso f nght brain deficits and le&brain strength,

such as the motor delays and climisiness and advanced speech descrii by Asprger, t o differentiate Asperger's s y n d r o m e h m higher-hctioningautha. For example, Atlas and

Gerbkio-Rom (1995) used their client's history of "age-appropriatelanguage M s and

cognition, motor cluminess, and ycamllig to relate t o othctsn (p. 208) to diagnose Asperger's

syndrome, despite an earty history of f

m which might suggest Autistic Disotda, such as

b'touchavoidance, gaze aversion, and persev~tiveness'' (p. 207). Others (Klinet al., 1995;

Pope, 1993) have pointeci to the similarities betwcen Asperger's and disorclers which indiate
right brain disfiinction, such a semantic-Pregmaticdisorder and non-verbal leamhg disability, as

an indication that Asperger's might have a nght brain causality.

Siuce a varicty of dhgwstic crital.f a Asperger's ryiwirome have b e n iistd to idcntify

qmdrome, tbc prrvdence figures f athe duotdavary. Using the six

people with -a's

criteria for Aspager's syndtomt that thcy bad devtlopcd, Oillberg a d Gillkrg (1989) fouad a prevalence rate of 10-26 per 10,000 among children of normalintelligence, anothct *4per 10,000

among chilchen with mild mental -0%

a d zero among childrtn with mon severe mental

g of 1519 Swedish school children, Ehas

retardation. In a subsequent study involving a d

and Giliberg (1993) found a pmal~cc of 0.36% usingthe Gillbcrg and Gillkrg criteria
(Appendix A), OS% using

Bmnna, and Nagy (1989) (Appendix B) critetia, and

0.29%using strict ICD-10 (1992) &teria (Apperdix C) @. 1MO).

Asperger's (1944) subjects wae a i l male and he thought that the autistic disorder which

he was describing W O U . k much more cornmon i n d e s , spedathg that "autistic psychopathy

might be an extreme variant of male inteiiigencen,which he belicved was more absact and

Iogical than that of fernales (Wolff&McGuire, 1995, p. 795). M a l e s have kenmore fkquently

identified as having Asperger's syndrome tban f d l e s , w i t h Eh- and Gillberg (1993) h d h g a male t o fernale r a t i o of 4: 1, using Gillbcrgs' criteria

Etiolomr
The exact natue of the etioiogy of Aspagds i s unlniown. Szatnm (1991) States that:

"Likeother PDDs, Asprger's syndrome has a devclopmcntal-ncumlogic etiologyn(p. 87) and

that: "Presumab1y, meas of the brain rtsponsible for socididon, communication, and play have

43

and Aspergeis syndrome behg fouad in the same family mowxnan, 1988; Gi11bcrg, 1991; Wmg,
1991) suggest tbat thme i s a c o n g d c ctiology for the two disordem. Van bvclen

(1971) suggestedtbt "outism~tswhmthae~tbeg;aicticprrdispositionfotAspager's

synrome phis the occumnce of bnio damagtw (Happ, 1995, p. 92). Othcrs (Un a ai., 1995;

Pope, 1993) b v e suggestcd a nght-kim ddbt in Asperger's syndrome, as opposcd to

disfiinction i n the left brain for thoac with au!ism. Revalc~x studits have fomd that Asperget's
is more cornmon than autism, ocnmiag in at 1
tc 2629 per 10,000 rarigc ( E h -

& Gillbc&

1993;Gillberg & Gillbag, 1989) cornparcd t o 2.0-4.5 pa 10, for autism (Gillbag & Giiiberg, 1989). Of course this cornparisonalso depends on the criteria for autism and for
Asperger's syndrome being use in the survey.

Whetber Asperger's syndrome is jmrt of the autistic continuum or a separate

developmental dissbility, it wes listai as one of five Pervasive Devclopmcntal Disorders in the
DSM-IV. The 0 t h d i s o r d m in this categoryarc: Autistic Disorder, R & s Disorder, Childhood
Disintegrative Disorder, and Pavasive Dewlopmnital Disorder Not Othcrwisc Specfied

(Including Atypid Autism) (Amcrican Psychiatrie Association, 1994, pp. 65-78). Ibe DSM-IV

iists simar critaia to those given by Wmg (1981). Gillbag and Gillberg (1989), and Satrnan, Brrmner, and Nagy (1989) except i n the arca of Ianguge, whae the DSM-IV does not note the
difjculties in languagt that the rcsamhcrs have rcporied,stathg h s t d that therc is "no

clinically signifiant g c n d delay in languagtn (American Psychiatrie Association, 1994, p. 77).

Like the DSM-IV, the ICD-IOfds to cmphasizt the subtle difficulties with language that those

44

with Aspergds

t o cxpcrmcc, stdng instead: "A Irkof any ciiaically s i m a n tg e n d

delay i n language or cognitive dmlopmcnt. Dqpsis ropiimsthat single words shouid bave

developed by two ycars of agc or carlia au that communicativephrases k used by thr years
of age or eatlicr" (Wdd HeaIth O r g d d o n , 1992). The followbg diagnostic criteria for
Aspergeis s y n b m e arc W i n the DSM-IW

1. Qwbtivt impairnient in sooiil M

o n

2. Restricted rrpctitive and stawtyped pastems ofkhaviout, in-

and activities

3. The disturbance causes clinicaliy signifiant impairment in social, occupational, or

other important areas of fimctioning.

4. There i s no clinically significant g e n d delay in laneuage.
5. Then i s no clinicaiiy signincant delay in cognitive developmmt or in the development

of age-appropriatesesheip skiils, adaptive khaviour, aud c u i o s i t y about the enviroment i n childhood.

6. Criteria are not met for another specific Developmental Disorder or Schiu,phrenia (American Psychiattic Association, 1994, p. 7 7 )

The DSM-N diagnostic aitaia for Autistic Disorder

h m the above critena for

Asperger's Disorder in that "qylitativcimpaimicnts in comm~cation" @. 70)i s listod as a

critexion for autism and not mentimal for Aspctsct's s y n d r o m e . Also, the Autistic Disorda
criteria include: I)elays or abnormal fnctioning in at least one of the followhg ancas, with
onset pnor to age three years: (a) social interadion, (b) language as used in social

communication, or (c) symbolic or haghtive play" @. 71), w h m the criteria for Asperger's

45

Disorder state: 'There is no clinicaiiy sipikant &lay i n hguage, cognitive dcvelopnentor in the development of agc-qpqmhc stshelp skiiis, aqtive bhaviour, and d o s i t y about the

environment i n cbildhoodn@. 77).

It~aOmtbcsediPgno&Cntai.tbtthcDSM-LVisiadi~ailrtAspcrs~s
synbme causes a subtle impairment of socielirdcnctionsid tbat it may be diffmtiated h m
autism by the quaty of the impahents thst arc m a n i f i It secms b

m the DSM-KV

descriptions of Asperger's anci autism that Asperger's is c o n s i d d a less sevm manifestationof

autism and that it might be placed at the top en of an autistic continuum. Although Asperger's

syndrome is iisted as a separate disorder in the DSM-IV, the DSM-N aiteria for Asperger's

syndrome do not seem to differeniate Aspergds h m autism in such a way to make Asperger's
the unique disorder that Haiis Asperger descriW.

Researchers have recogaized that social interaction i s one ofthe prime &fici& of both
Asperger's syndrome and autism. It seems to k the pievalent deficit of those with Asperger's

syndrome and it i s also seans to ewt on a continuum within the autistic spectmm of disorciers.

Research in the area of social intetriction has provid some data tbat diff'tiaes Asperger's

and autism and that also provides a basis for theones that atiempt to cxplain the two disordem.

Researchers have begun t o examine why it is dif]Eicult for people with Asperger's and
autism to communicate with O*.

Rcsearch has rangeci h m an cxamiaation of the gaze

respome of those with Asperger's to stuies that have tested wbether those with autism and
Asperger's bave a "thtory of mind." Tantam, Holmes, and Cordess (1993) theorized h m their

46

study of social interactions iwolving subjects with Aspaseis syndrome that "a lifelong absence

of gaze response to social cues including specch could expiaina number of the deveioprnental
fatures of autism inciuding lack ofjoint attention with othas,lrcL of undnstaadiagand
&kaive response t o othcrs, and poor duicnmiiiiih *ono f k i d ~

s( p . n11 1). Tautam

(1992) has also theorizcd that a Irk of gaze rrspoluie may a b m u n t for the fiailame of thow

with autism to develop a "theoryof min." Cowley (1995) @vesa simple exphmation of "theory
of minci," as "anawareness that other people arc capable of diffkrent mental actions, such as

pretending or believing or misunderstandingn (p. 67). Researchcts (Baron-Cohen, 1985,1988;

Baron-Cohen, teslie, & Frith, 1985; Leslie & Frith, 1988,1990; Pemet, Frith, Leslie, & Leekam,
1989). who have devise tests to detamine whether a subject derstands that other people "cm

hold false beliec about the world and that their behaviour can be prrdicted on the b i s of these false beliefs rather than on the basis of what is actually true" ( B o w l e r ,1992, p. 879), have
demonstrateci that a majority ofmentally retardeci childm with autism lack a first ordg "theory

of mind." Prrsrmiably, if one does not understand that mother individual has a mique way of

understanding the world, one cannot kgin t o commuuicate with them.

The ability to undastand that otber people are capable of of diffrent mental actions, such
as pretending or believing or misunderstanding,s p p t a ~ t o exist on an continuum within the
autistic popdatioa. Baron-Cohen (1989) f o d tbat older, less mentaliy retardeci autistic children

had a first order thooy of mind but not a second order thcory of mind ("the ability to predict a
protagonids behaviour on the basis of his or her M s e belief about another person's tme belief
about a state of &airsn) (Bowler, 1992, p. 879). Bowler (1992) tested the ability of young

47

adults with Asperger's syndrome O solve problems tha requkd fint oder thwry of mind

rrasoning and then more pmblaas that rrquirodsccond orda theory of mind ressoning. H e

discovered that the majority ofthe Aspe%ds subjects that bt tested couid sohn problems that
quired sewd order theoy ofmmd

B o w k theoriestba! the superior cognitive

abiities of Aspmgds subjccts dows thcm t o soive the second order thory of mind pmblems

that he presentd in his snidy (p. 888).

Ozonoff, Rogm, and Pcmhgton (1991) a h found t b tthateir subjeds with Aspe%eis

s y n d r o m e could solve nrSt and second orda theoy of miidproblems in formai test situations @.
1117). Howevet, they discovend that the individuals wm much l a s skilled at qyickly applying
a theory of mind when informally chatting with the examiner between t e s t s (p. 1118). Bowler

(1992) agrees with this informal appraisai oftheory of mind skiii, waming that "theirlack of

intuitive lmowledge of sacial behaviournwould stiU be apparent in rd-fe social situations that
do not alIow time for them to cornpensate cognitive ability for intuitive knowledge (p. 888).

Bowler and Worley (1994), in a shdy of social SUSCeptibility, f o d that their subjects with
Aspergds synrome were b l y to adopt a consistentlycoaforming or nonconfonaing strategy

in response t o social prrssrin. This pattcm varid h m that of the controls who tendeci to give a

number of conforming rcsponscs and also a n u m k of nonconforming rcsponses. 'Ihc authors

cautiously suggcst that the consistent pacm in subjccts 4 t h Asperger's may indicate
perseverativencss and a b a tcndency not t o k socidly infiucnccd(p. 695). nie authors M e r
suggest that the social impairment of people with AspaBcis syndrome "mayeot be a

straightlonivard fimction of metarepmcntation"(p. 6%). Not eiig able to think about thinking,
may not W y explain an inability to interact socially. It appears that people with Asperger's

48

syndrome can thmL about thinkhg in f9misl test situations, but they stiU have a grcat dtal of

diflicultyunderstanding tbe subtlties of social interaction.

Hobson (1993) disegrres with the "thory of mtdn explandon for the inab'ility of those
with autism to relate to 0 t h people. H e thinks that the i n a b i i t o =lete i s the primary deficit

and that it causes the lack of a "theory of mind. Hobson states " Ithink that the autistic childds deficient ot aberrant capacity for intetsubjcctivee n g a g e m e n t with othas is what causes
theu limitation in understanding min&" (p. 13). Hobson believes that the ability t am e n t a i l y

represent o k people's reptesentations (metaqmsstation), is part of a socialdevelopmental

process that n o d y occm, but has gone awry in chbcn who en autiotic @p. 12-13). Since
they have not been able to engage with others, they do not imdastand that other people have

subjective experiences and unique psychologkai orieniaionsto the world ( p . 12).

Although those with Asperger's do appear to have a " t h wof rnind"or some understanding that other people rnay thi& dflerently than they do, they do not sean to be able to
use this knowledge quickly in evey day, practical situations. Bowler (1992) cautions that

although the adults in his shdy wae able t o solve problems in which they proved that they were able to "thinicabout thinking about thking, they were handicapped in theu ability to relate to
others to mch an extent aiat they raquirrd sheitered 8ccommodationandor employment"(p.

890). Bowler (1992) postdates that this lack of abiity t o apply knowledge "mayresult from

49

what Frith (1989) tnmsa lack ofa nccrmaldrive for cohcrtllct,'' i.e., an

~~hypothetical

central cognitive pmccss which oieanips and c o o d h k s information fimm memoy and a range
of sensory and pacepbiiil sysicms insuch a aay as to rmdnthem ofmlnrimum nlcvance to the
psychoiogical t a & in hruidw @. 890). This wouid idicate tbat those 4th Aspagds are unable
to quickly, intuitively attend to the relevant aspects of a situationor a c o n v d o n to probiem

solve or t o accataiD the piirpoae ofthe interaction.

Frith's (1989) theory that those with AsPrpet's do not gmsp the gist of a conversation
because they arc not 0 g -

d discrading informasion accotding b bow relevant it is t o

understanding (p. 227) s#ms t o explain the difficulty that p p k with autism an Asperger's

have with i d e n m g faces and i d e n m g acprrssiolls. D a * ,

Bishop, Maasteed, and Tantam

(1994) found thai high abiiity auristic and Asperger's chdrcn pedomied siBnificantlyworse than

controls at perceivkg both fcial and nonfbiel stimuli, wncluding that their results may support
Frith's (1989) thesis "that childrcn with autism an unable t o combine ali the sepamte threads of
information i n a stimulus t o melre a more m e a ,wholen@. 1053). They also believe that

their d t s support suggestionsby Miyashita (1988) and Tantam a al. (1989). "that chiIdren
with autism pmccss faces i n trrms ofth& componcnt parts, ratha than holistidy" (p. 1053).

H a p p (1991) suggests that pcrhepB the breias of audstic individu& are-O

in

such a manmthat they do not need to process information for meaning. She theorizes that one
possibility is that the braias of people with authm are wirrd in such a way that tbey can acquire
aii of the stimuli that are in the environment, they have trcmendous rote mawry skills, end

therefore they do not need to be selective @. 228). Happ f.urtber suggests that perhaps the

50

memory 0-011

of autistic individuais is d c a l l y ciiffiirent h m most individuais so that

they do not follow th same route t o sbrage an d e v a l ofinfonnationthat m o s t individuais

do, and, tercfm, unijke for most individuais, the devance of the informadion i s not kcy t o its
storage and r e i d @. 228).

Whatevcr the mson, Aspcrgcfs individuais do mt intuitively attend t o the intendecl

message of a commdcation. Happ (1991) states that "itis a common observation that autistic
people seem to m i s s what we would regard as salient in a situation, and pay close attention to

what seems to us irrelevantn(p. 227). She suggests that bighiy inteIligent people with
autism/Aspe%er's syndromemay leam t o recognize certain cornmon social situations by ushg

their intellects and their nrpaiences, but that they do not automaticaliy read the situation for
intent and meanhg as most people intuitively do. She says that %ey may leam to rrcognize

situations wbere people do not mean wfiet they say-workirig on simple d e s such as:

itaally fdse or puzzling speech + d e =joke

Literally false or puzzljng speech + b w n = sarcasm'' (p. 234).
Having to take time to consciouslythiiik through what is bappeaing in a social interaction, rather

than immeiately, unco~lsciously, intuitively "rrading" the situation would definitely handicap social understadhg. Whatever the cause, the sociai interaction eficit of those with Asperger's

syndrome is seriously debitating.

Cumnt research on Asperger's syndrome has k g u nt o clarifilthe clinical fatures of the

syndrome, identined social interaction as one of the crucial deficits of the syndrome,and

51

presented possible hypothcses as to why dintcractionU so difficult for someone w i t h

Asperger's. It scans that the

logicai inafor rcscarch i s in ways thet personai intaaction

can be k i i t a t d for somame with A s p % d s . A treatment pian thas iddnssedthe crucial

deficit of social intemaion would k m e I y bcnfficial, especiaiiy for adolescentswith

Asperger's. Personai Involvement With Pcoplc With Asperger's Syndrome

I believe that my f h trecognhble exposiac t o someone with Asperger's syndrome

occuned in the 19809, when 1was taching elernentary school. One of my snidents appeared to

be socially odd and stiff.with an unusual pattern of leaming strengtbs and weaknesses. As a

teacher, 1noticed that this Grade 5 stuent, who 1wili c d John, was having a gnat deal of
ditnculty comprehending the m a i n idea of a pamgmph, the plot of a story,or even the meaning of

questions that asked why, what, or how. At the same time he was able to pick obscure daails out
of a reading assignment and he wdd d aloud with paf& pronmciation. 1noted tbat John

seemed to enjoy dating each assigmnent and test that he was given, and that he could teii me the
exact ate of each piuticular class assignment that had been piven thtoughout the year. He did

not serin t o liLe changes in mutine and he was fomr sslriiig me what was going to happai next.

I n order t o help John, 1gave him extra nading cornphensionacacises to do at home and kgan
Wnting the day's agenda on the clasmn,m board. Hower, these me8SUIeS did not seem to

change the basic ditncuity that John secmeci t o have with undcrstanding whole concepts and
king able t o nmimeriP, synthesize, and d y z e .
As John's teacher, 1also remember the fhamion I enwunttered in trying to impress upon

John's parents that his inability t o comprchend the main idea ofa paiagraph was a scrious

o rny cxprdon of conccm, thcy hd pcrceivtd thcir son as king vcry learning dissbility. Pnor t
acaemic sincc he hadp l f ~ ~ l l l c cx dc e p t i o ~ y w t l on i d i scbool tluks thiitrrquired rote

leaming and memorizationof detas. For example, J o b was an acciicnt spcla and he had

achieved superior maiLs in many of the fiil-in-the-blanktype tests timt e bid bangiven at
school.

John's classrnates aiso paccived him as behg very bright. Howevcr, 1thinlr that they
wouid also describe him as king a "gak" end a "nad."

H e had very little in commo~ with his

classmates who gmcraUy wem kind to him, but ldt him alone. John a p p d t o fit Asperger's

description of "thelittie professor'. He wore his shirts tightiy buttoned to the collar, when his
classrnetes were lounging in sweats orjeans. W e most of the boys in the class w m involved
in hockey. baseball, and succer, John could not catch a b d .His movements appeami to be

ciumsy, awlward, and poorly tirneci- As a d

t of his rnotot clumsiness and his inability to fit

in, John spent m o s t of bis reesses pawively watching the others play. Besides appearhg clumsy and odd, John was clifIlcuitt o get close to. There did not seem

to be a way to have him relax anci enjoy the company of his clasanates. At the same time that 1
perceiveci him as king stiffand awhvard, I felt an urge to protcct him. H e scemcd to k so

extremely socially naive that 1imagincd he would be immediatcly M s c d by the world The
invisible barria that Teachcr A describcd ~ccmed to be prtscnt, prevcnting human contact and
yet aliowing a clear view of the VUjllerable individual undemeath.

Although 1intuitively noted the ciifferences betwecnJohn and other students whom 1had
taught, 1was not aware of the term Asperger's syndrome util1993 when 1heard a description of

the disorder in a U13ivanty c

h . As thc dordawas king dcscribtd i n c h , 1W t l y

thought of John. As 1 have leamed m m about Aspersds ryndmrnt an 1have met individuals
d o have been given the cbgnosis of A q q p f s syndrome, 1have bccome convincd tbat Jobn

m e t the criteria for Asperger's-

1was inaigucdby the descriptionof Asprger's syndrome which was prcscnted in that

1993 University class and as a d

t 1chose Aspaods as the topic of the papm tbat was required

for the class. My choice of papa&pic was saendipitous, king the h t step ia a path that has
lead to extensive pmftssionai involvcmcnt with iedividuals w i t h Asperger's syndrome and eventuay to the writing of this thesis. It sms that my initial interest has evolved into a major

wmponent of my We.

The f h t unversity paper thet 1wmte about Asperper's syndrome was instrumental i n
helping me to secun employment in the fall of 1994. 1had discussed the pper with a teacher fkiend and whm she leamed that a teacher/counsellorwas repiiind i n het school division to work

with a boy who had kaidiagnostd as having Aspergets syndrome, she advised me ofthe job
opportunity. 1submittcd my papcr on Asperger's syndrome with my r6sum6,I was gantai an

interview, and 1was employed with the maruiatc of establisbing a relationship with ajunior high

boy who ~ f w t o d go to school and who had mxntiy ban ~

syndrome.

s as d having Aspergefs

Thus, 1met Martin [sic], the child of Parent A. 1wss introucdd to Mariin by the school
psychologkt who had baninvolved with him at school. The three of us m e t for a mid-aftemoon

s n a c k During our meeting, Martin dominated the conversation, iaterjectinginappropriate

54

comments, biPtm topics, or clwerit words wbm tht school psychologist end 1bcganto rallr t o
each other. This pattem ofdenmhg t o be the focus of attentiona d b t iimahle t o deal with
three-way wnversaSiolls oontinucd hughuutmy mVolvemctlf with I k t h hnmg this initial

conversation, Martin pasistedi n tiilLEig about dl-terrain vehicles. I lerirncd that his favourite
place in the wodd was his famy cuttage Pt the lakc, whae he couid ri& a-tcirain vehcles and

enjoy a sense of M o m . hkth's intcrest in dl-tetrain vehicles gave me a mty and we rigrred

to meet the next day, plamhg t o visit a store that sold these vehicles.

M yh t task in establishing a nlationship with Meriin was to get him out of bed. hiriag
the fa11 of 1994 he had kgun a pattern of staying up mtil4:00 AM., watching television, and then sleeping for twelve ho-,

effectively sleeping tbrough the houas that school was in session.

He had also tetreated to the basement to sleep, whcre he had dadrened the windows, and placed a
television at the foot of his bed His mother descrihi his sleeping bebaviour as Vetreating to
his cave to hidefrom the world * It was my task to get him out of his cave.

Initiaiiy, 1got Martin out of bed each affenioon by giving htn two waming phone cails

and then ardvng at his house t o engage him in an activity that he had cxptessed an interest in
and that we had both agrced to. Sometimts this involved an outhg to a place of interest, such as
the ail-terrain vehicle store, and o t k tima this involved an activity in bis home, such as

watching one of his fvouritc movies or nadirig a script aloud. Gradually, b u g h this process, 1 leamed more about Martin. Martin had fntastic vetbal sLills. He had mernorizcd lines h m mmy television
wmmercials, movics, and songs, as well as entire ski& andjokes H e had an enonnous
vocabulary and his pronunciation was impeccable. He sccmed to enjoy using his verbal skills to

5s

entertain and h p # s peopie.

He would o

h do v o i a impmsions ofmovie cheracteft. Martin

had been using his v a k l abilities in a c h i l M s &ama group for many y .

As we drow h m

place t o place, Mutin uscd his CXtCIlSive repertoirt ofvoiccs and Iuiesto entertain me.

Martin was not cifisid to bmch any topic. H e did not sean t o keep thoughts or feelings
to bimselt

In our thhl meeting he told me that he o h felt @essai and that he had thought

about suicide. He even escri'bcdhis suicide p h H e o h hadto k told tbat his chosen topic
of conversationwas inappopriate, d e , d e , or embarrassing. Martin semai to k extremely

open and incapable of subterfbge.

M a r t i n openly told me about some of the rage that he had Qtpaienced in the past. H e
liked to present hunstifas a good fighter, saying that he had a boxer's injury on bis hand h m al1

of the fights he had been i n .I nr e a l i t y he had exprrsscd his anger and frustration at school by
punching a window and at home by pushing and kicking the walls. At one point his parents had had him smsted for trashing theu house. ManiD was actuaily very fiightened by the arrest and

nom time to time he would t a l k about the fear and humiliation he felt i n the jwenile detention

centre. Although M a r t i n boasted about his prowess as a fighter, his mother and the school
psychologist reportai that M a r t i n g e n d y icm away from thrcatcning pas. in UIlfamiliar environrncnts or with pecft he may hare r c g d d as thnatcning, 1have seen Martin physidy
draw himselftogaheri n a seiGprotcctivemanna. 1can picture him shuffling down the hall,

with his head d o m and his arms h g i n g ineffcively at bis sides. Rathcr than king

intimidating, Martin was a fiightend, loncly boy, who was unable to connect with his pcers.

Martin spoke to me about the loncliness he expaieaced each day. W h 1frst met him,
he was a twelve-year-old who had aimost no contact with his peers since he did not attend

56

school. His past nrpcrience with childm of his own agc involved but, w o n , ami anger.
since hewasoffentesPedandkdidnothavethcsLlsr~rsciprocellyintasctwitbhispcers. I

noticedthatwhenbc~giventheoppabimitytD~withpecrqhedidaot Iartcad,he
kept to himsclfor chse t o spealc to any adult who was prrsent MPtin muid paierally st&e up

a conversation with any duit that hc eecormtcrr& Tkse conversations could go on for quite
some time because Martin was weil spoken and hc had a d t h oflaK,wIedge about a variety of topics to sustain the w n v d o a It seemed that M a r t i n ' s verbal sLls allowcd him to have
contact with adults, but that this s t m @ was not a &Vicient asis for peer fnendships.

Ahhough Martin nrprrsseda k a n intcrtst in ali-tcrraia vehicles during o u fixa meeting,

this was not his only ami of intawt d he did not use d-terrain vehicles as a topic of interest

and conversation with everyone he m e t . Martin tcnded to be intcnstly intctitsted in one topic or
activity for a period of t h e and then move on to swther preoccupation. Whiie he was in the

m i & of one interest, it was very i5CUIt to move him t o another activity. haiiig the tirne that 1
was working with him, he showmi intense, exclusive interest in: ai-terrain vehiclcs, electric b a s

guitars, snowboards, tattoos. and smoking M u t h became very hnowledgeable about each of his

topics of interest, and he would engage d e s people in long question and aiismr sessions amund

his pmccupation. Prior t o entcring a store with Martin, it was important to discuss time lines
and m y agenda, so that Martin wouid not s p a d hours t a m g to the sales Evcn so, a lot of

effort was rrquirrdt o persusde Martin to compromise his qenda

One absolute block for Martin was school work. In particular Martin cxpresscd a disiike

for mathematics and any activity involving the use of a pen or a pend. M & h enjoyed using his

stafK

home cornputer t o explore the Inteniet, but he quickly became b a t e d with keyboarding. It

57

appeared that Martin bad extmnely poor fine motor skiils and minimal mathematics skls. He

could not fi-

out how much mony hc shodd givc a salescl&

or what change he sbould

receive. Movhg Matth towardS q p @ g in school-iikc activitits provcd to k the most M c u l t componmt ofmy job.

I n tirne, a ciaricuum consuitant and 1tncd to use Maitin's anas of intcriest to move h i .
towards engaging in a ahool-like actjvty and to have him enta a school building. Some of the activities we tried wae: ushg an office i n a scbool as a writing m m for Martia and 1,havhg Martin act as a cornputa nitor on a one-twne b i s in a school Iibmy, having Martin and 1 work as teacher aids in a French immersion cassrwm, and rrtuming Martin to his elemenw

school, w h m he played with chilcken in the counsellors office and used the libmry computer
fiing system. I nd l ofthese activities Martin needed my supemision and intervention. The most

successful activity, as far as producing a schwl-like papa assignmcnt, was the writing pmject.
Martin w t e a short comedy slrit called "Obfuscatean Ox". It was heavily based on the Monty
Python skit, "Confwa Rabbit"and 1tyjed most of it, with Martin dictating. However, there
was a product and, for a time, Martin was excited about producing it as a play.

Unfortunately, Martin lost interest in each project and refuscd to participate, leaving me
to tutor the child on the wmputer or foiiow the teachcr's instructions.

In some cases, it seemed to

be Martin's egocenicity tbat causeci problems. As a twelve-yearold he wmted to play the

computer himselfrathcr than accommodate t oi mm-ycar-old. In the guidance office Martin
wanted to choose the game to play with his six-year101d cornpanion. In 0 t h cases, Martin

encountered difjcuities because he did not monitor his language or bis behaviour. In one school
he was reprimanded for sweariag in the phot-

mm. H e then became very angry with the

58

people in the school and rrfwd t o rraim. In eadi case, M a r t i n seemed unable or unwillingto
bend to the demands of the school mviro~ent

Luckiiy, Maitio did fiid a schod tbat hc wantcd to attend and a prograrathat met his
needs. i n the spriag of 1995 WC bcgan txp10ring options fot h h t h for the 19951% school year.

Martin iiked the idea of atcndhg a coUcgiatc, whae hc could possiily have more flexr'ble
programming and k g i nt o k intcgcatd back into school by attendhg only a few classes in
subject areas that interested hlln, aich as Automotive Mtchanics or Ihama. When we visited a

coliegiate that he could possibly attend in the Mlof 1995, h k t h announcd that he reaiiy liked
the anosphere and that this school was the one that hc wantd t o attend. Somehow M a r t i n felt

that he would fit in this collegiate environment, with older students Who were more lre aduits
than children.

Mariin's acceptance into the Autism Program in this colegiate did not mtan the end of
my involvement with him or with Asperger's syndrow. Instead, it lead to a more intensive level

of involvement In the fall of 1995 I began to work as a teacher aid i n the Aibism Program at this
coliegiate, and, thus, my comection with Martin continued and 1began to meet and work with

other students who had been diagnosed as having Asperger's. As a tcacher aid, 1spent many

hom tutoring some of these students, such as David and Adolescent A, on an individuai basis. 1
began to compare Martin, D a *
Adolescent A, and otha individuais with Asperger's who were

members of the AAsm Ptogtam. GradUBUy, my sense of what Asperger's meant to those who
had been given the label and to those Who werr pmftssionally and pctsoPally hvolved with them

developed. Fiaally, I d v e d at the point w k e 1wanted t o maice Asperger's syndrome the

subject of my thesis. 1had personally experienced the tragedy of these adolescents who

59

desperately wanted t o comect with tbcir peerq but could not Developing personal interaction
plans for adolescents with Asperger's syn&orne bccame the logical solution to thcu dilemma and

the subject of my tbesis.

Ratide

Adolescents with Asperger's s y n d r o m ebecame the fimu of my shdy fot practical and logical reasons. Practicaiiy, they were the population with whom 1was working, but more
importantly, adolescence is a crucial time for intervention for those with Asperger's syndrome.

Adolescence i s a key developmental t h e period tba impacts on the fuhnepsychological health

of every individuai. It sams to be especially aucial for those with Asperger's syndrome.

Adolescence is a developmeatai stage wtme people are particulerly drawn to the peers.
Unfortunately, adolescents with Asperger's are handicapped by the teciprocal social interaction

deficit of Asperger's and are unable to make the social comection with peers that i s so necessary
at this stage of development Tantam (1991) states: "Asperger's syndrome rnay cause the greatest

disablement in adolescence and young adulthood, when succcssfbl social rclationships are the
key to almost every ~~~hievement" (p. 148). The natural desire to coancd with pccrs at

adolescence may motivate adolescents with kppnser's t o try t o appmach theV prns. T'us,
adolescence i s a aucial time t o have personai interaction plans in place for those with
Asperger's, so that they rnay begin t o xuake successfi connections with their peers. Without any

possibility of positive peer interaction, adolescence may k a particddy difncult time for those

w i t h Asperger's s y n d r o m e .

Research have m t d the eteriorajionin psychological health thas dolescents w i t h

Asperger's may mwimter.
W t r ,

Esicabo, d Tolosa (1992) give a smmmy of

previous fkdhgs in this regard. Thcy npolt tbat although mmrchers, (Bisbop, 1989;Szatmari, et al, 1 9 9 0 ) . have mtd thirt the dhgmsis of Asperger's syndrome has a comidaably atta

prognosis that that of Alitistic Duorder, & d individuais may be predisposcd t o develop other psychiatric disturbances e . 7 3 9 . They cite Giiibrrg (1990) as stating that a substantial number
of individuals with Asperger's deteriorae psychologically a t adolescence (p. 735). Bathier et al.
give the foUowing list of psychologid pmblems that may k enwuntered by adolescents with

Asperger's s y n d r o m e and the researchers who have fcported each type of problem: affective

iilness and BIUtiety flantm, 1988), antisocial behaviour (Baron-Cohen, 1988; E v d &
LeCouteut, 1990; Marson, et al, 1985; Wolff& Cull, 1986), and psychotic symptoms (Clarke et
ai., 1989) @. 735). Berthier et a i . ,

i n their own 1992 study, reported the COICXiSfence of

Asperger's syndrome and Klcine-Lcvia syndrome in two m a l e adolescents. Both of the subjects

in the Berthier et al. study had bccn diagnod as hahg Asperger's syndrome as chiidren and
began displaying symptoms of KleineLevin syndrome, such as "hypersomnia, compulsive

eating, and disturbances in behaviow, cognition,and mood" @. 735), in adokscence. It appears that adolescents with Asperger's tue particularly MlJIld1e to a deterioration in psychological

health.

M a r t i n ' sb e h a v i o u r ,when 1fitst met him, of tctreating t o his dah,basment hide-away to

sleep away the daylight, school hours, could caiainly be iataprrted as a symptom of depression.
Many ofthe students in the Autism Program bad bem admitted to psychiatric facilities at some

61
point in their adolescence. During the rpriiig of 1996, a girl in the program, Nancy [sic], who
was persevcrative about police 05ccrs and violen, was admitte to he psychiatrie ward of a

local hospitd. Each -ber

ofthe Autism Pmgam, cxccpt one, was on rit least one type of

medication, ranghg h m anti-enxicty medication t o anti-psychotic medication. A fm of the

students were talriog up to six diffrent medications, giving than a c b d d cocktail to control

their anxiety, deprrssion, bitam thoughts, and obsessiom. It sems that the triacl of impeimients
of autism or Aspe%er's synrome, ncluding %ciprocal social interaction,v

d end nonverbal

communication. and restrictedrange of hagbtive acivitiesn(SEabnari, 1991, p. 82), may lead

to secondary psychologid health prabIems, such as mxiety, deprdon, and obsessive

compulsive disorder.

The triad of impaiments of someone with Asperger's syndrome may also be interpreted as being the symptoms of someone with a psychiatrie illness. In the 1960s Sula Wolff began to
diagnose schizoid persodty whea she encomtemi childten who met the following characteristics: "solitariness, lack of empathy, abnormal sensitivity, rigidity of mental set,
especiaiiy pervasive interat in petians, and musuai communications"(Wolff&McGuire, 1995,

p. 793). Later, WoHand Chick (1980) addd the fahne m d ktasy" t oc -

the

boys with the disorder (Wolff& M c ,

p. 793). Although by 1980 shc ncognized a grcat

many similaritics bawcen hcr description of schizoid pctsonality disorda and the autistic
disorder that Asperger dcsCnbed in his 1944 paper, Wolffcontinues to give the label schizoid
personality disorder to children with these fatures (Wolna McGuire, 1995).

62

Pertieps many p p l e who could k diagnosed as bwing Asperger's syndrome have been

given other diagnoses sufh as schimid pmonaiity disorder. ChtaMy, Tcacher B has noticed a

change in diagnosis ovn the yeam that hc bas workad with this popuia!ion. Whn 1asLed him
when he had f h t cncollllfthd somamewith Asprgds, he repliad=

WefZagain, niy m e n c e is t h dl o f the stdnlir when I'rst started were diamosed

m Chil<mood SchIzophronics. And t h it c h g e d over to Pervasive DLwlopmentaI

Disorder, maisn. Asperger 's H o m e . Sb I t h k t h I tocogn&ed

yems ago.

And then. once I cbi$ed the diagnosis in ny he& I krew tha some ofrho AUis that I'd

seen yems ugo were Asperger 3, butprobably misdiugnosed by the people who were
dicgnosing them Sb probuMy since the begming of working with them, I've been
noticing them

Ryan (1992) alers cliniciam t o the possibity that m e n t rrsistant mental illness may be an
indication that the client was misdiagnoseci as rnentally ill, and thet Asperger's syndrome shouid
be considend in rediagnosis sina this condition may Supanciallymimic mental iilness. Ryan
States that the "eccentricities,cmotionai lability, d e t y , poor social fimctioning, rcpctitive

behaviour, and fixed habits [of somconc with Asperger's synbme] may mimic symptoms of
other illuesses, inclrdiag schhphrenia apetnrm illnejs, b i p k disorder, a n x i w disotdcrs, and

obsessive-compuisive disorder" @. 807).

Sometimes clhician do mgnize Aspcrser's syndrome in the mi& of feehms which

could be interpmted as mental illness. Atlas and ~ i R o s c l l ( 1 9 9 5 rrport ) the case of a
sixteen-year-old girl who was admittcd t o their acute psychiatrie unit showhg ' b m i c mood,
fiight of ideas, gaze aversion, end interpersonal intnisivcness" ( p . 207). They used ber early

6 3
history of "touch avoidance, gaze aversion, p e r s c v d v ~ l land ~ ~o ~t,h r k h a v i o d fatures
suggestive ofAutisiic Diwrda" @ . 207) couplcd withMige-appropriate hguagc skills and

w@tion, motor clinnsinfss, ad yePnisg fbr n l a t i n gt o otbeftn ( p . 208) t o give hcr the
diagnostic label Aspesga's syndrome* Concivably, tis girl and otba adolcscc~lts likt hcr couid
e given a n u m h of mental tKSS lebels.

Sincc Asperger's syndrome i s a subtlc dsabiity, it may not k rrcciaatcly dkgnosed.

Oftcn people with Asperger's syndromedo not d v t any s o r t of iagnosis untii adolescence or

adulthcd, when, as Tantam (1991) states: "Abnodtiies that an mild eaough t o be disregared
in childhood may becorne much more conspicuous, leading to a spccialist opinion king sought
p . 148). They may bave had a numba of previous diagnoses prior to king for the first tirne" (

labelled as king Asperger's and tbey may continue t o bc given differmt labels, including ones

that categorize them as mentally ill. Tregically, it may kthe secondary feeairrs of autism or
Asperger's that mimic the ftatures of mental illnes that first bring those with Asperger's to the

attention of m e n t a l hcaltb practitionets. By the time those with Asperger's seek help for their
anxiety, depression, or obsessions, these feaures may dominate the clinical p i c m and obscure a

diagnosis of Asperger's.

Adolescence is the t h e thet pople with Asperger's begin to corne to the attention of the

mental health commdty for a n u m k of rcasons. Pope (1993) links the furc to obtain fiends
at adolescence by people witb H i g h e r Functioning Autism with affkctivt disordem

Higher fimctioning paieats who wish for iends may feel isolateci aud even hopeless

because of their deficits. Depressive episodes in adolescence are not uncornmon, and

these chdren are at a bigha t i s k fw the devtlopment of m d disoidao. (p. 103)

It seems tbat by adolescence, with thc

fot 0 1 1

and ~ e a c ethesc , m o r e

iateliigent people with autism me gainhg somc insight into their disability and the impact of
being fiendlesse Crppe, Si-

dY

i(1995) found thet CCsocial competence i s lower

among autistic childrentbm t y p i d y developed chidren, and lowest among the m o s t highly

intelligeat autistic cUdrennand intcqmtd tbese d t s t o meanUautistic p ~ o n who s are more intelligent and bctcr able t o r d the exnotions of 0th- may rrcquirr grcater a e s s

of

qualities that differc~ltiate them h m nomai people'' (p. 144). Unfortunately, awareness of their

difficuities without any hope of improvement, may lcad t o bopeless~less and helpless~less or rage.

Each of the participants in my shody mentioned M o n and anga as king very

evident in lives of adolescents with Asperger's. Sometimes this rage lads t o daitnictive acts,
such as the "trashingo f the classroom " that Adolescent A describes. Both Pannt A and Pauent

B have had to deal with d m o n of walls, piches, and M t u r e in their homes by tbeir
adolescent children with Asperger's. Parcnt A and h a husband chose to bave their son m e d

when he violedy attacked the 4

s in theu home, whe Pannt B sb@s that her daughter cen

not Live at home because she and her husbgnd clm not k e q h a ssfe and stop her destnrtive

rages. 1have pcrsonaily h

d Martin tlaeasent o kill his parents if they did not give him the

presents he wantcd for christmas and Parent B rccais that whea ber daughter was admittcd to
the hospital she was ttirratniiag to kiU both herseIfand her mother with a M e . Even Adult A,

who describes hiniseIf as "stfassed"and Who appcars to be very law-abidhg and rigidly

conforrning, tallrs about the fhmion he felt as an adolescent

A:

But the bi&gestpobIem was ...I w a d t wwving. l k e wam't emugh

choZZenging subjects that I war t&ng a d m u g h aca&mia und that sort of thing. It
took me a long t i m e to realike, when nry M m tookme out of Jmon Brown Collegiate

[sic] that that wm .....Iguess? in nry bes interest. Y o o c kunv at the t h e I wus rebelling.

I=
A:

MmmmHmmm, I mean, ot t k t age?1rebelled aguimt almost every authoriy.

Really! You wouldi,'t kww thotfiom talkng to you now.

I:
A:

I rebelled Oh, oh I was a rebel!

Nancy, who was rrdmitted to a local hospital's psychiatrie ward in the spring o f 1996, tcportediy attacked bath her motber and a seciirity guard @or to her hospitakation. Dewey (1991)

explains hostile reactions i n individuais with Asperger's by stathg: "A child who is ofken
rejected and tormented may wefl develop hostile defences" @. 194). It appears that adolescents

with Asperger's may becorne so austrated that they actout by destrayhg pro-

or by hinting

Sometixncs the ngid, egocentnc thinking of individuais with Asperger's may lead them to
participate in anti-social hvities. E v d l and LeCoutcw (1 990) present a case study of a

sixteen-ycarafdwith Asperger's syndrome who showed no mnorsc aftcr he was caught f k

setting.

T h e y report that the sixteen-ycar-oldwas not obscssed w i t h h s , but that he saw m

m o n why he shouid not continue with wbat he thought was an interesthg activity. H i s self-

centred explanation and his inability to consider the effect ofhis action on other people were the

66
authors' main mofconccm. Otbcr pcople with Asperger's syndrome may find themselves
participahg i n illegai, mti-social rtivities fot s i d k rrisons. Nancy's atta~k on the s e c u r i e

guard~haw~flituedbyha~hpoliacmcndviolcnccdkias'isten~tin
caryiag out her own agenda, without wnsdng the ammpnca ofher actions. Whm people

with Asperger's rigidiy follow thCi own agendas and ioiacssswithou wnsidaiag what cffct
their actions may have on 0th- people, duy miy occasidy k pdorming illegd activities.

Fnth (1 991) explains why individuais with Asperger's may commit airniaal offences:
"Sometimes their offices arc part of theu single-miadad pursuit of a special hiterest, somethes

the rrsult ofa defensive panic-induccd d o n and somcbes the consequence of a complete lack

of cornmon sensen ( p . 25) Adolescence may k a time when those with A s p g c t ' s syndrome
fhd hemselves i n trouble w i t h the law.

However,adolescence does not have to k the kginning of a iiegative spiral for

individuals with Asperger's. The awareness that may begh to m a g e at adolescence for
individuals with HFA or Asperger's may have positive C O I ~ S ~ Q U C IKanncr I ~ ~ ~ . (1973) reazed
that an increasing awareness ofthtir diffctc~~cts h m most 0 t h peop1e couid have a positive

outcome for those with autism.

H e asscifdd that

"mlmost successfi autistic patients, unidce

most other autistic chiidm, became u n d y awme of thtir pdiaririties, and bcgan to make a

conscious effort t o do somahllip about uum"( i n Capps, Sigman, & Yirmiya, 1995, p. 139).
There may be hop for the sixtcen-year-oid firc ~ e a because, a although he showed no remorse for fke setting, his mother described an improvemcnt in his social khaviour, 4kportingthat he

had gained some insight into his social difnculties d t i n g in him fctling embarrassecl at times"

67

(Everall& LeCouteia, 1990, p. 28%. Adolaccnis with EUlfism or Asperger's qmdrome, who are
able to perceive t h & autistic @tics, that would dance tbcH lives. S may k able to seize an opportrmity to adopt action plans
b the motivationt o intaactwith o n e ' s pns is sttang and the

consequence of not k i n g able to do so may k mm,dolcsnce is the time to haw achievable

personal interaction p h in placc for those with Asperger's synciromt. Rcscarch that describes
and presents a critique of such plans would k a valuable contriiutiont o the litmtm on Asperger's. It would provide clhicians, teachers, parents, and individds with Asperger's with a
guide to facilitation the pasonai interaction tbat adolescents w i t h Asperger's so desperately need.

1have taken a qyalitative approach to this study for @cd,

histoncal, and philosophical

re8sons. F m a pracical point of view, 1have had the oppottunity to be pari of a qualitative, case study-type, research project, having kenimmersed in the daily Lives of adolescents with

Asperger's s y n d r o m e for eighteen months. Historically, an understanding ofAsperger's

syndrome has developed through the prescntationof case &es,

beginning with Asperser's own

account in 1944. Philosophidy, 1believe in the powcr of descriptive language t o convey

meaning. 1think that people can bcgin t o un&mtand Asperger's syndrome by king able to form
a mental picturc of a varicty of individuals w i t h Asperger's. Frith (1991) explains the value of

descriptive case studies whai shc statcs:

At this stage it is lsrgely tbrough detailed case studics thai we can kgin to undersiand the

syndrome. Just as one cornes to mgnizc a Mondrian painting by lwking at other

Mondriam, one can leam to rrcognizc a patient with Aspiger syndromeby looking at

cases d d b e d by Asperger and other clinicians. (p. 1)

68 1would like t o pr*lent the interview data h

m the eight interviews that 1conducte in

such a mamer that the readas of this thcsW gain an UndcrStqndingof Aspcrgtr's syndrome and
how p c ~ o n ainteraction l pians may k urd t o bud COIUICCtions with peefl for adolescents with
Asperger's. 1h o p by p m d n g a rich descriptionofnincpcop1c's atpcnences w i t h Asperger's

(the Qght intcrviewcts' plus mine) that the ridas of this thesis will incorporate these experiences into thci.own data bases d so kiaiuethcir
(1994) states thet "case saidy ~h~ 240).

ofAsperger's. Stake

assist rcadem in the conshuction ofknowledge" (p.

H ejusfifies this statcment by explainhg how readers may consuct lmowledge: "Certain

descriptions and assertions arc assimilated by nadas into memory. When the resea~~her's

narrative pmvides oppommity for v i d o u s expcrience, readcrs extend their memories of

happenings" @. 240). Stake and Trumbull(1982) tcrmed this proces, "where a d a cornes to know some things told as if he or she hadaCpmenced thcm, nahnalistic generahtion" (Stake,
p. 240). Therefore, accordhg to StaLe and otha wnsuctivist rescarchcrs, a research report that

provides a nch description of people and places may enable the mader to maLe natudistic

generalizafionsand t o nach an undersianding of the phenornenon that the researcher is

describing. M y objective in prescnting a quaiitative tbesis is to have the raders ofthis report

reach such an undcrstandhgof Asperger's syndrome.

1interviewcd ci& people in the data gatbhg stage of thU thesis. The people who 1

METHOD
Participants
~

intmimed wat d i peniody or profssionaliyinvolveci with ad01eSCCIlfS with Asperger's

syndrome. The eight participants includod: cm cighteen-ycar-oldwith Asperger's syndrome

(Adolescent A), a twcnty-thfee-yc8t-old with Aspngds s y n d r o m e(Adult A), a parent who's

adolescent son had been diagnoscd as having Asperger's syndrome (Parent A), a parent who's adolescent daughter had kea diagnosecl as havhg Asperger's syndrome (Parent B ) , a teacher
assistant who had tutoreci adalescents with Asperger's syndrome, on a one--ne

basis for 4

years (Teacher Assistant A), a teacher with many years ofteaching in maiastnam classes, who

had been co-directing the Autism Program for 2 yeats (Teacher A ) , a teacher with many years of
experience teaching children with PDD c

ci n alternative s classmoms, who was the

other director of the Autism Program cracher B ) ,a d a speechand language pethologist, who

had been providing speech and ianguage thcrapy t o childmwith autism and Asperger's
syndrome skice 1982 (Spech and Languagc Pahologist A).
1met cach of tbac eight participants tbrough m y cmploymcnt b m 1994 t o 19%. Parent

A is the motha of Martin, the junior high boy who 1was initiaiiy h M to wo* with. Adolescent

A is a mcmber of the Autism Program, Tacher A and Teachcr B are the c o d k t o t s of the
Autism Program, and Teachcr Assistant A and 1werc both teacbcr assistants in the Autism

Program. Adult A has hem Teacher B's snident for many yeias and he stii drops into the
Autism Program severai times a week to c o d t with Tcacher B . study, and help with a flyer

delivery route. Parent B i s the motber ofJanc, an eighteen-yearrold member ofthe Auti*sm
Progrsm. Speech and Lmguage Pathologist A i s the spctch md laquage pathologist who serves

theAuiismProgram. E.chofthcparticipantsbasaCOIlllCCticmwiththcAutismProgram,whrr
1workd as a t e a c k amistant duchg the 1999'96rhool year.

Inaway,tbcAutism~rrilrclacw~dtbebirsisoftfrUrbdy Because .
each of the participants was comectcd t o thc Autism Program i n #nie way, thcy o h describe
the same people and the same situations in th& interviews. Although David, Jane, Mertin,

Nancy, and Frauk wcre not intenriewed for this study, diy,dong with Adolcsceat A and Adult
A, were ail mcmbcrs ofthe Autism Program and &scriptionsof the experiences with

Asperger's syndrome form part of the basis of this paper. Each of these students or ex-students

form part of the participants understanding of Asperger's s y n d r o m e . Tachers A and B . Speech

and Language Pathologist A, and Teacher Assistant A have 1had professionai contact with
each of these d e n t s . Parents A and B,obviously have a gceat deal ofexperience with theu
own cbildren, Martin and Jane, but thcy have aiso learnod something of the other d e n t s in the
program through parental iiivolvcmcnt with th program. Adolescent A and Adult A have spent
years with the othcr mdentp in the Autism Pmgtam, and uiy have cach workcd individually

with Teachers A and B,Tacher Assistant A, Speech a d Languse Pahologist A, and I . Thm

is an intertomdon, tbrough the Autism Prograra of eacb participant, includiag mysekf.

After I M decided that 1wanted to interview people with pcisonai or profdonal

experience with Asperset's

s y n d r o m efor my thesis, and 1had meiveci consent for my thesis

proposal h m my thesis cornmittee and also h m the Rcsearch and Ethics Committee, Faculty of

71

Education, University ofManitoba, 1appmdmi six people and d e c i them if tbcy would be interested i n bchg ntnvicwcd about Asprser's syndrome. Tbese six people wm: Adolescent
A, Adult A,

Parent A, Teacha A, Teachcr AspisEBat A, md Speechand Lsaeuege PPLhologist A.

At this t h e , 1rlso arplainedthat the interview would k tape-mxrded and thiit the dia &m the
interview would k iiscd as the h u i s ofthe t e s a d for my mastn's thesis. I asked evtryone,

includiag Adolescent A and Aduit A, to think canfully about my i#lucst and 1pointed out t o

them tbat they were frce t o choose aot to participate. When each of the participants agreed t o be
interviewe&1set up an interview tune and place with them. 1met with Teacher A, Adult A, and Adolescent A on seprate OCC8Sions, individuaily, privately in classrooms aAa school. Parent A

and Teacher Assistant A chose to meet when they w e r e alone in theu own homes. Speech and
Language Pathologist A and 1met alone in a meeting nwnn at h a central office. 1met each of

the participants at bis or her convenience.

At the beginning of each meeting with a participant 1thanlced him or hm for takiag the

time to be interviewai and 1asked that an information letter and consent form (Appendix D)be

read and siped before the intanew began. The information letter outliiLed the nature of my
research and the topics of the questions tbat 1wodd be askiag in the intemiew. 1explained that

the interview would k tape-remrdedand that the data h m the intervjew would be used in my

thesis as anecdotes and as the basis for anaiysis. 1acknowld8ed that i fthe intervitwee did not
want the interview to be taperecordeci, 1would aot proaedwith the interview and that he or she
would not be inciudtd as a participant in the stuy. 1gave an approximate time for the interview

of forty-five to sixty minutes and explaimd that there wodd be two mini-interviews of approximately ten minutes to cl*

data and to discuss interpretations. 1explaineci that 1wodd

72

keep personal Mormation confidcntial curing the shdy by not using the participant's name or

identifyiag information in my ata notes or i n the thesiq and that I woud crase the auio-tapes once the rrscarch was cornplctcd. 1aiso cleady statd that the intcnnewct had the ri@ t o refuse
to a ~ w c any r qucssions, to end the intcnricw at rny tirne, and t o opt out ofthe saudy at any tirm.

Each interviewcf was giwn the option of r d @ a eopy ofhis or ha iiltamw tmscript and
a s d that portions of die interview would k dcleted a t his or h a qucst. 1ritatcdthat 1

planwd to send each participant a summay of the & t s

of this research. AU six potentiai

interviewees read the infonnafion lettcr and f o d y agrced ta be intervitwed by signhg the consent fonn.

Mer 1hed interviewed the first six participantssI decided that 1wodd also interview
Teacher B and Parent B. The decisions to include two more participants wcre basedon

informationtbat 1gathered during the study. A f k 1had interviewecl a number of people who
had referred to Teacher B in their interviews and 1leamed of his long-tam involvement with
individuals with Asperger's syndrome,1decided tbat an interview with him would ad depth to
my data In addition, 1thought it was important t o interview both of the codbctors of the

Autism Program. 1decided to interview Parent B a h 1lemecl that th= was conttoversy
around the diagwsis of Aspagcr's syndrome fot Mertin,the child of Pmnt A. 1was n f d to

Parent B by Tcacfcr B and by the Special Edwation Coordiaator in the coiiegiate, both of whom

knew h a and who ha had profcssional arpaience with h a aughta, Jane. 1foliowcd the same procedm as 1had with the othcr six participants in gaining informeci consent a m both Parent B and Teacher B t o participate i n the study. 1intervieweci T e a c h e r B on two occasions in a classroom, early in the rnoming More school started, and 1intervieweci Parent B in her own

73

home. W 1 t h the completion oftkse two htmtitws, 1hed the audio-tapod da~a that 1would use

as the basis ofmy thesis.

Intcrriews

In each of the eight intewitws 1askcd <luaiionsr r o d ~ ~ K CMC c topics. 1asked each
participant how hc or she understands and d e s meankg out of Aspegcr's syndrome, what he
or she has noticcd about the personal interactions of adolescents with Asperger's syndrome, and

what he or she belims wouid kilitate pasonal interactions with pars by adolescents w i t h Asperger's. 1also aslrcd each participant about his or ha hi-

of involvement with individuais

with Asperger's syndrome. 1asked Parents A and B whcn they had nrst k e n given the
diagnostic label, Aspager's syndrome, for their chiidna, 1asked Adolescent A and Adult A

when they had first hcard the term Asperger's applied to thcmscIves, and 1asked the other four
participants whcn t h y h d fkst started working with individuab with Asperger's syndrome. 1

asked each participant, excqt Adolescent A and Adult A, t o rcflect about how Asperger's
syndrome effects him or htr pnsonally. 1wantcd t o h o w ifthe participantsthought they had
changed as they had gaincd expnicnct working with adolescents with Asperger's. Obviously, the entire interview of AdoIesce~~t A and Aduh A was a rcfiection of pasonai cxpaience with
the syndrome. Al1 of the participants wae atLsd th samt g e n d questions, but the wording of
the questions dependad on the orientation of the htmiewee.
1went to each intcrvicw with a list of mittest questions to ask that pazticuiar participant. 1had a total of six slightiy differcnt interview pmtocols (Appendix E ) , one for each of the

following people: dolescent, adult, parent, tacher, tcacher assistant, and speech and Ianguage

74

patho1cpin. Each set ofquestions was simar to those for Adult A, with the orientation changhg

according to who 1was intervi*ewiag. M y writtcn cpestions for Adult A askeck what it means t o

him to have Aspergcc's rynQome9what it mflintto him whcn he nnt became awan that he was
in some way diffrent ficm other people, how he expaienad adolescence with Asperger's, how
he has changed since acblcscence, what bc leamcd about b t a a c h gw i t h othas as an adolescent

in an autism program, what dvice he d

d give to teschers who are planahg pcrsonal

interactions for adolescents with Asperger's, and what he ha9 leamd about intcracting with
others since he left the a u h n popam. 1asked each of the psrticipents ail of the questions on

his or her interview protocol. Sometimes I addd extraquestions as the intcnriew proceededto

clarify an answex or to pursue a particular line of thought 1a h encouragedeach participant to

teli awcdotes t o illustrcae his or her answers. 1 rrsponded to the participants' answers and

anecdotes with my own body language, mcouraging comments, and the occasional remark. In

this way, each interview included the m e key questions, but varieci h m each 0 t h interview
according to the peispective of the intcrviewee, the nature of my supplementai questions and

verbal and non-verbal~tsponses, and the direction that interviewee's responses lead us. Each
interview was stnrtincdby the writtcn questions, but open-ended i n tamsof the participant's

respoases and the nature of the developing dialogue b the participant and 1.

Thne was a gmat deai of vtuicty betwcen the inttrvitws. They varicd in length h m
forty to eighty minutes. In somc cases, 1spoke vay little, primerilyasking the written interview questions and thcn allowing the participant to q l y in length. In other cases,1had t o rcphrase

my questions or make encoiirsging comwnts t o elicit an answcr h m the participant.

Sometimes,1had to refocus the interview and ask the next written question t o bring the dialogue

75 back on topic. Fmm time to time, 1asked pucrtiom to broadcn or dccpai the dialogue- M y

emotionai mpnse t o the participant varieci d w i g cach interview, and noai interview t o

interview- At d o u s times 1found myselffalingp m f o d y m v d , sad, bord, surpriscd, and f8scinated. E x d y tht ~ a m e @ o n

elicitcd a d c t y of rcspoll~e~ from the participants. Th-

i s a weaith of niritairilto k d y d in the eight au&~-tapesh m th iatenriews.

M y adysis of the intervjews kgan as 1was intenriewing cach participant. DMng each
interview I was an observer, as well as an interviewer. 1observed how each participant raponded to my questions with bis or her body Ianguage, facial expression, tonc of voice, and
response time. 1also observed my own response t o the pariicipant and t o the interview, in tams

ofmy outer responses of body language and tone of voice and inner rcsponses of motion and

thought. 1took note of which puestions elicited a puick, easy response, and which questions
produceci a pause and a shifng of eyes by the participant 1noted rny feelings of surprise or

fsination and the direction that my thoughts moved a f kceriain statcments by the intcrviewee.
As each i n-

pmcedd, data d y s i s occumd. FoUowing each inteniew 1wmte ajournal

eny recording my impmsions of the interview.

AAa cach inttrview 1b q m t o transcribc the d o - t a p e of the interview- This pmess

involved listaiingt o each sentence that the participant and 1k t

sevetal tMesso that I wuid

record it exacty. The listcning and te-listeaing t o cach segment of the tape, sentence by
sentence, enpinecl the intmiiew into my mind. Once again, 1hcard each change of tone of

76

voice and each pause i n the c o w d o n . By tht time 1bad completdy tr'anscribedan interview,

Icouldhcartheip~ewinmymindasId~~ontheprinttdpsge. AsItranscribed
each interview, i n in slow, jmhsWng mmna, 1couid mt help bu absorb a d intenializewhat
1was hearing d wihg. Indeed, to change tbe spoken immw to a wrien page, 1had t o

decidehow~htcrpret~peechpiittansinaWnttenf~ IbcgantoputslashmgLswhrr
people changecltopics mid-sentence, commas wbac thae was a d i @
pause, anci a serious of

dots to rrpnsait longer pauses. I addecl cxcIamation meks whcre participants made particularly
vigorous comments and 1highlighted words in bold t y p tha the participants said with gceat

emphasis. 1included every word that 1couid hear on the taph including MmmmHmmm,habitual
words, such as You hm?, and swear words. Some of my written interprrtations did not make
grammatical sense, but they oonveyed the rbythm of the conversation. By decicihg how to

interpret the spoken interview in written fonn, 1was continuhg t o analyze eech interview. I n

addition, 1was gaining a memory data bank ofeach inflection in cach sentence in each interview.
From time t o tirne, 1added comrncnts, reflecting my tboughts and feelings as I transcnbed the

audio-tapes, in the thesis log that I was kceping.

M e r 1had complacd my fmt intdew, 1had the mcmory of that interview to use in

subsequent interviews. 1tricd not t o tell one participant whet anothcr participant had said, but as
1completed more ad more interviews, 1f

d that 1was C O -

and coiitrssting wliat the

previous participants had said t o wbat the curent participant was saying. This happcncd in my
observer d e in the interview. While 1was limniag to a participant's amver, 1could thiak.
"%t 's interesting, the last person I interviewed mentioned that, too. " ccasiody, 1did use

77

whatIkmw~~aprrvio~~intervi~~,toaddasupplemd~onorpiirsuca~of
thougbt. For example, in Adult A's interview, when Mult A said:

I was too nofvr h k thea And Iguess, t b t I rahvqys a trapp u c m get cmght ia I
mean sometimespeople qpem to k th&, d then thqy oui 5 (JIt&. You k t thqy

ain 'Y
1thought of Adolescmt A ' s comment about gctting "bunied"in the past when hc cd to initiate

friendships. I clarifiai wtiat 1thought Aduit A mcant by his cornmats end then 1decided t o
mention Adolescent A's similar atpaience to Aduit A Our convcrJesion went U e t h s :
1 :

MmmmHmmm Sb, huve sme bad experiences tlougtymc thatyou have to be

cmefl?
A:

Yeak Yes! Oh, yes!

S'o. and ar p u have got oIderD you have Iearnedfiom some of those experiences,

I:

andfiguredo u t h , yotc bww, you have to be a little bit carefkl mundpeople.

Ar

Oh, yes!
Sbmetimes you get O t u n e
Oh,yes!

1 :
A:

UmmmD when I was talkng to Adbfescent A [sic], he was sqdng thut his attitude
~ n n'mes. y

U thor he woitsfor m e o n e to CO= to him becme he bas got burned too i

So he doesn 'tgo out and by an wwkfiiemk A:

You kww thor i .the u@iortunate thingfor me is that right now I thnk I 'm not

oggressive enough. And that is the b o p thtyoic cm get trapped in and Adolescent A [sic], cm get rqped in, ifhe just wats. You 'vegot to let your gumd down a linle bit.

78

This is the most conctete demra tbiit 1made t o amther participant's interview, but 1did rnake

orher less obvious d comparUons diaing 0th intcrvjcws. Howcvct, by fr the majonty of
analysis was occ\irriiig inmyhad, as Idrnevcr~wingdriiimncofrmtairl h m previous

intemiewsto~&ctonwhrtwashsppesiineinthepmcntintcnticw.
The intennews occumd i n th fouowing ada:Tcacher A, Paciit A, Speech and
Language Pathologist A, Adolescent A, Adult A, Teacher Assistant A, Tcack B, and Parent B.

The srst inteMew with Tcacber A and the k t interviewwith Pamt B were twelve weeks apart.
During this threc month @oc! 1conducted all eight intcrwiews and ttansctibed six of the

interview audio-tapes. The lasi two audio-tapes werc transcn'bed during a thnt week period
following Parent B's interview. Each auco-tape took a minimum of eight horas to tmscribe, so

that during this m e e nwak pcriod, 1was spendhg a grmat dcal of tirne i m m d i n the subject
rnatter of my thesis. 1have a total of 197 pages of &pt

h m the eight interviews. The

comments ofeach person are single spaced, with double spacing indicating a change of speaker. There is a grrat deal of data h m the interviews.

Mer 1had transcn'bed esch interview 1gave the interviewte a copy ofthe transaiption and asked him or hm t o r d it and give me fCYd)isCk. The mini-interviews, when each
participant commenteci on bis or h a &on

t o rrading the trensaipt of our interview, added to

my research c h t a Some people made corrections t o spelling and details i n the tmmcript. m e r

people wmmented on how the literal anscript of the interview pointed out patterns in their own
speech. A few people aslced that sections of theu ttansCi.ipt be deleteci. There were some

79

cumments that summarized the impression that the transcript gave thcm about what they were
saying about Asperger's syndrome. Ibe mini-interviews wcrr a useful check on my

i n w o n of the iatervicws-

M e r 1had complcad tnnscnaiiig ail eigbt interviews, 1bcgan t o formally d y z e the

ata by o q p i h g it i n t o catcgorics and themcs.

M y first catcgorization was t o list all of the

staternents in the trrtnscripts that smed t o matchor patein to the DSM-IVdiagnostic criteria

for Asperger's syndrome. 1stedthe w m t s h m the anscripts under the following headings: (a) Quaiitative impairnient in social interaction, @) Restrictcd rcpetitivc and
stereotyped patterns of behaviour, i n t a e s t s ,and ELCtivities. (c) The disturbance auses clinically

signifcant impairnient in social, occupational, or other important areas of hctioning, (d) Then

is no clinically signifcant gencral delay in language, (e) Then is no clinically signifiant delay in
cognitive development or in the dmlopmait of ageappropriate seKhelp skiils, adaptive

behaviour (other than in social interaction). and curiosity about the environment in chiidhoad,

and (f) Criteria is not m e t for 8110th- spccific Pmrasive Developmcntd Disorder or Schimphrenia. While 1was categoruing diagaostic statcments h m the interviews according to
DSM-IV criteria, 1notiwd that some of the intVicwcfs' sta3crncnts scemed to indiaite

alternative criteria for diagnosis, so 1rddcd another heading to my list d e d , Otha Suggested
Diagnostic Cnteria My second way of organizhgthe data was to look for themes in the interviewees' statcments about treatment plans for adolescents with Asperger's. My initial

headings in this section includad: (a) DcvcIophg a hcalthy seEpcrccption, @) Developing an

understanding of social interaction by studying people and their khaviours and feelings, and by

80
studying social siniations, (c) Dmloping avenues for social intetactioq (d) Fincihg an area of

special interest, a niche, and (e) Roviding a means to rtnietiinthe world. Af?er 1bad developed

these categories, 1rcad d i ofthe &pts

again a d 1listrd 0 t h idcss that secmeci to k

l iist ~ included ~ the foilowing

prevaient in the participants' thbkhg about Asperger's. ' I I Yl headings: (a) I d d apprenticc people, (b) Cul-

ofautism, (c) Advocates, and (d) Valuc of

social interaction with cach 0th. By rradiag and mmdhg the tniascnpts, and by catcgoriPng

and re-categorizingthe interview data, 1was increasing my understanding of Asperger's and

synthesizing the material t o be hcluded in my thesis.
A second way of formally anal&

the i n t e r v i e w data was to consida each interview

separately and to attempt t o perceive h m the peqective of the inteniewee. Each participant

had a unique understanding of Asperger's and by atemptingto assimilate his or h r

understanding, 1 was broadening my concept of Asperger's and adding depth to the description of Asperger's that 1was able to relate. I was also able to conceive of different ways of making

meaning out of Asperger's for someone who has been given the label, for someone who's child has been given the label, for someone who works htensely, one-tosne with people with
Asperger's attempting t o help them leam, and for someone who has to consider long-range
programming and the overaii picturc for adolescents with Aspager's. By considering the

perspective of cach intcrviewee, 1I able t o make speculations about the eXpenences and

emotions that lay khmd his or h a interview stakmaits. Andyzing each interview for meaning
bmadened my overall undCrstandingof Asperger's.

The eight intcrvitws thrt 1conductcdwac the rmin source of data for this thesis. 1did,
however, obtain idcas and data h m othcs soiiras. 1have r d d v e l y about autism and
Asperger's syndrom~anasIhavekenrrdiiigIhavrbecn&leto wntrsstandcornparcwhat

the participants mentioncd i n their interviews with what the maifch rrpolts have found about
autism and Asperger's.

In addition, 1have the M yj o d tbat 1kept es 1was working with

Martin during the 199495 sch001 year. I wmte this j o d so t h 1wuld dure daily happenings

and my impressions ofthem with the school psychologist who was Martin's case manager.

During the 1994195 school year 1met w i t h this scbool psychologist wcekly or bi-weekly to
discuss my journal entries and his impressions ofthe case. These reguiar r n c e h p aidcd my

understanding of M a r t i n and ofAspaget's s y n d r o m e .I n addition, I have an entk year of

observation of adolescents with Asperger's and of individuah who work with them h m my
employment as a teacher aid i n the Autism Program Duriag this two ycar tirne p&od 1have
also written anotha univcrsity paper about Asperger's synchrne and planneci a presentation about the disorder. W of these activitics have honecl my understanding of Asperger's and
prepared me t o wtite this thsis.

The many sources of daa for this thesis cmnc its vaiidity* The eight interviews, the
lengthy perod ofpersonaf obsmmion i n the Autism Program, the joumang of my time with

Martin, the thesisjournal airit 1have

k m m&gs

to disnus the data, and andysis ofthe

ciifferences and similarities baw#nthe interviews and of the petspeaiveofeach interviewee

82

provide checks and comter-checks for the acamcy of the d a t a . I have used tnaagutation as 1
have gathered data for this thesis. Stske (1994) d&m t&mgdation as "a profess of using

multiple Pnocptioiis t o clarify rneaaing, ver@bg the rcpaability ofan obscivaiion or

intetptetation" ( p . 241). 1wili aiso continue t o use hnghtion as 1synthesize ail of my sources
of data in the writiag of this thesis.

As 1have written this thesis I have bad t o continually synthesize and analyze data The
first chapter is an introduction to Asptger's, where 1have chosen t o introduce each of the eight
participants and myseIf, by giving a sample of our intetprttations of Asperger's. The second

chapter describes the background for this study. 1have given a literature miew of the research
history ofAsperger's syndrome, a description of my personal involvcmait with Asprger's, and a

rationale for writing a qualitative study invcstigathg pasonal intaaction plans for adolescents with Asperger's synhme. In this -nt

chapter 1have describeci how 1have gone about

m 1plan to d y z e m y research data by

conducting this rsearch. I n the following c

synthesizing intewiew &ta, rescarch data nOm the literatm, and my interpretations of research

data. In the final chapter, 1will conclude the thcsis by summannpig what 1bave leamed about

Asperger's s y n d r o m eand pcrsanal interaction plans for adolescents with Asperger's. It is my

intention to produce a document that WU diow rradas t o vicariously nrpaience W ew i t h

Asperger's and that comprehensively q a p l a i n s how others rnake meaning out of the disorer, so

tbat they can make nahaalistic gcnctalizafionsand corne to th& own undetstandings of
Asperger's. By integrating and anaiyzing ciimnt rrsearch th-

on Asperger's syndrome with

qualitative descriptions of life with Asperger's h m nine Paspectives,1intend to add depth to

the understanding ofAsperger's and p v i d c a mute to social interaction for those with
Asperger's syabme.

DATA ANALYSIS AND DISCUSSION

Stniaurrfor~AMlySisaudDiscussi011

Iorgsnizedthedaraanaysisby~olipllethcdrEiintostajcmcntsthatdescribad
Asperger's syndrome aad statcments t b t dcscn'bed social interactiontr#rancnt plans for

individuais w i t h Asperger's syndrome. 1f M & critcgoriztd statcmcnts

describai

Asperger's synhrne into statcments tbat mldcbedthe DSM-IV hpostic mitcria for Asperger's

syndrome, s t a t c m m t s that differcd k m the DSM-IVdiagnostic criteria for Asperger's

syndrome,and statcments that secmed to k unique and did not relate to the DSM-IVdiagnostic
critena for Aspei%er's syndrome. As 1d y l e d the data that describeci social interaction
treatment plans for individuais with Asperger's syndrome, 1rccognimd thcmes and 1synthesucd
data into these themes. This chaptcr is Wnaen end organhed mund the

thar 1used to

anaiyze the data The first section pertaias t o the participants' understandingofAsperger's

syndrome, while the second section patains t o the participants' ideas about how to fmilitate
social interaction for individuais with Asperger's Jyidrome. Within each section, I incorporateci
a discussion which reflected my d y s i s of the perception of each participant, my adysis of

related research Iiterature, and my personal eXpCnc11ceas marcher.

Dtscnbing Asperger's Syndrome

Asperger (1944/1991) called the disorda that he was dtscfibing

psychopathy

because it causcd such sevm problems w i t h social integration that afictd individuals wac best
desaibed as king isolatcd within thniiselves, cut off h m the world. Each of the participants

85

noticed that some sort of banicr preventeds a i d interaction for those with Asperger's. Teacher

Ade~cn'bedasaisetbstthabapLsticovcrisy~ma~tbematotheworld,
stopping inuitive human connection. M u i tA i n -

hving Asperger's syndrome as king

isolatecl h m tbe -Id.

When 1asked him whpt havbg Asperger's ryndrome memt to hirnhe

2 have much b p e for a

said: 'Y wed to thh tha it meQ12tyarhicalEj,WQC shrmnecl: DU

normal Ire. "

For Tacher A and 1senshg the bairia is pert of a mtative diagnosis of Asperger's

s y n d r o m e . Although 1ha ncva heardofAsperger's syndrome in the 1980s. I nc0gni.d that

something was biocking intuitive, hurmm conaectionwith John, my Grade 5 student. Certainly,

Teacher A uses her perception of what she calls the shell or theplprrc b l d t to recognize
someone with Asperger's syndrome. Tacher A a d 1had the following c o n v d o n about

intuitively sensing a barrier in someone with Asperger's.

I:

In thinhg back were there miy otheer shdens thatyw ewr encountered that

now. you think wouldft in the Asperger's cutegory? TA:

I c m 't nmembet specrfic s&nfs. bu I w d d bet mything. You h m I've been

teachingfor a long time. Before, in going back to the seventies in the reguIar Stream.
And kit& who p u could sense a dzrerence but p u di& 't kvnv quite whot it was. IPm

sure some of them. I: ActucrIlj tM's when m y f i s t iinrast In Asperger's came, when Itmght a student

mrd l couldn 't quite place whot was wrong.

TA:

Whenyotc don 't bww the diaposis or the descriptive s a ywjust intuitively

86

knew something wasn 't there. And l thinkyou sense the shell more than anything. And

thal #nd of absence.

Otha pcticipants, such as Spach a d anguage PathoIogk A, recognize that they arc

not king invitcd h t o a relationship or a pcmod commUIUcation by iadividuals with Asperger's.

Speech and Lsnguiigc Pathologist A diites: "Tky &n 't illv11e- They dbn 't invite people to be
w a m to them, Or to l i k them "

Thae are subtle ways that people indi-

interest and iavolvcmeat with those to whom

they are reletiag. A wam, liwly gaze is one such indidon of i n t c t t s t , A s p g c r mcognizcd

that the c h h he was dcscribing did not use the nonverbal aspects of communicationt o add

meaning to their words. istead, t h & nonverbal communications were absent, poorly timed, or
inappropriate to the conversation or social situation. Asperger's (1 9441991) description of what

is lacking in the nonverhl communidon of childnn with autisrn explains why one wodd not
feel invited to interact with them.

The d k t d m c e is particularly clear whcn they are in convasetion with others. Glance

does not meet glance as it d a s whea unity of conversational contact is established.

When WC talk to someone we do not ody 'amver' with words, but we 'amver' with oiit look, our tone of voice, and the whole q m s i v e play of face and ha&.
A large part of

social tclationships is conductedthugh eye g t ~but ~ , such ielatioaships arc of no

interest t o the initistic child. @. 69)

Teacher A petctivts how painfid this failwe to connect in social interactions is for aolescents
and adults with Asperger's, nohg the problems that Frsnk, David, and Adult A have in social

87

intetactiolis. She says: " R q jwt don 't c o n e in u normal & i d o f wuy. %ey have the same
n e e k And the bn'ghter thry ors, the higkr tkfMetioning

the more p i f i l it is. " Whm

childrenwith A s p q e r ' s do not show an iiidaast h rciating t o their prsnts their p t s may be
profomdy huzt Parent A d c s c n i how Marth~, as a toddler, did mt sean to want to plcase hU parents*

Also, before he wcu thtee#k was dz(,erentthrn hir sister [sic]#in thut, as u oyo~g kby.
as an eady walker a

d a tder, he di&'t do things toplease us.

Ifwc would k excited

becrmpe he had bomced O balt or &ne aqything he wouklh 'tnecessatily repeat it becawe L was pleased by uur reuction

-s

Another way that some of the participants have of understanding the impairment i n social

interaction ofpeople with Asperger's syndrome is to consider t h they la& social intuition.
People with Asperger's synrome do not s e a t ~ o have any social sense. Teacher Assistant A

described how Frank was continually askkg hcr about what she considerad common-place social

situations.

Frmk [sic] was ckcking with me quite a bit about whut I thought. Things that were Aind
o f ordimry. M t I thought was ordi-.
"Ip7ud woJdyou & in this situdiin?"

or " W W &yoic think of this situation?"

And some o f it wwld i d e chilken. For instance, 'Wouldthey be dlowed tu watch thh show on T.K ? " or "Wmld their pareii~s dlow them? "
J i t ind of ordinmy things l i k t h .
And then he wai imnae of himseF Like, at work "Doyou think ho likes me?" or

"Doyar thUiAthis?"

LIk k c d &

'tseem to recuiotherpeopIe.

Speech and Languagc Pathologisi A siys tbat individuais with Aspc%a's do not imdeRtsnd the subtle niles of social interactions. She explains: "In0 timing in the noding o f a sociid situation
mqy k sligkly

ORmqy k hava kat OB but th's e w g h to exclu& themfiom socia2

situations. " Shc explains why, as T c r c k A d c d b m it, Ihndjwt Und of misses the boa and

is unable to sustriin appropriate sociai iateradons so that he can maintain fncndships with bis
peers:

He W'tread the mes properIy- He 3 mivedinteerpeteed the mes- He 's

misinterpreted the messages. Sb he 'spobabZyentered a verbol r e m e e in the situation
at the wrong time, or said the wrong thing becmue he d i h 5 comprehend the gist of

w h was going on And I think Iackingpeor culture.

An inability to read social situationscan lead individuah with Aspc%er's into situations

where they are ridicuied, David's hancistand i n the iilisy is a good example of a poor choice of
social behaviour. Teachcr B descrjbcs wha happcns to David and other adoltsccllts with

Asperger's when they try t o d v e in the tcguk social world: ' ' T h c y walk into sitwtiom that

me so common place to regular stdnts and they don 1 kum, how to read the situation. They
become Iuughing stock and in sonro cases, sort of the clas.c l w a " Basically, iidividuals with

Asperger's syndrome bave a gmt deal of difcuity i n rradingsocial cues. They la& social
intuition and, thercfom, t h t h c y are ofkm unable t o imaactin a meanin@, seciprocal fkshion.

Asperger's theory thet individuais with authm have a "disturbance of lively nlationship
with the whole environment" (1 9WlW 1, p. 74) can k used to explain the inability of those with

89 Asperger's syndrome t o ~ k tto c people in sociril situations. It can dso be seen as a aucial

gmunding for nraent psychological theorics about iptism. Hobson (1993) klieves that the

inability of autistic childrcnt on l a t ct o odvr psople i s th ksis of tbm iack of derstandingof

other people's min&. Frith (1989) and Hkpp (1995) use ~1~

thcory t o explain why those

with autism do aot sam to attend to the iatended message of a comm6cation, hypothesipIlg

that they do not organize and iscard infimation .ccotdigt o how relevant it is to
understaning. Rocesstigidionnation fot meanhg dows most people t o ktapm subtle
aspects of communicaiion, such as h i a l m o n , tone of voice, inflection, and hand

movements, as components of the intcnded mcssage of the speaker. Ifsomeone with autism is
unable to synthesize d l ofthe relevant aspects of a communication into a meaningfid whole, he
or she is unable to understand the prapase of the commU1Ucation. Subtle intcnded m e s s a g e s ,
s u c h as irony or sarcasm, are lost.

The ability to %ad" the thoughts,feelings, aad intentions of

other human kings i s absent, making social interaction vey difilicult. Teacher Assitant A
staes, "1think if's on emotional dhbility. " A "distrnbance of lively relationship whh the whole

environment" is cvident.

The focus on obscure d d s , on a nanow field of interest, and on an egocentric refmnce

to the world ail seem t o k aspects what Asperger describeci as an iaability to date to the whole
environment. Individuais with Aspeiecr's syndrome do have a very autistic h
e of refaeace.

T h i s may k expresscd by a concentration on a vay narrow field of interest to the exclusion of all
else. David and Jaoc spent a gnat ded of t h e concentrathg on theu nspeaivc talents and
intexests in art and tmck and field. Frank and Nancy would intoduce their respective

90
pemeverative topics, molvhg amund hockey and wrcotlia& men in &orm
any person who was willhg to iisten in my sort of social con-

atul violence, to

Tbe egocm~tric h

e of

reference c m aise k cxprcsd by an absolute canenation on a pmonal agenda 1found that

it was cxtrrmely dificuit t o extract MPtio h mbis iiitcndtdplan for the day. Beirig Mabk to move out of an egocamic fiame ofr t f m also s+ans to k a way of&finhg Asperger's

syndrome for some of the participants.

Martin's mothr; Parent A, found that Mertin's smgle-mindedness and bis n n i s a l to

move h m his own agenda were the aspects of bis peffonality that b e s t fit a diagnosis of
Asperger's syndrome. She made the following ref-ces

t o his egucentricity:

H e 's wrqpped up in himserso compZeteiy.

He doesn 't have the senre of how he codd moderate h b behaviourfor those he is
living with

This kid has a di,,erent mind sec he think dt~erently.

ur conversation about what Asperset's meant in tcnasof h a son went like this:

I . =

Whrrtpartsof the diagnosis reullyfitfor p u ? k

t maks sense in t e m of

Mrtin [sic]? PA:

The concept of htc own schewm, h own view of the worI4 tkor we d l seem to be

powerless to clumge. His view of the world i s so singularly orionred to himerfthat no

amount of mpporttjrom onyone owr mry pen'odof time seems to have c b g e d that.

Teacher A noticcd that Frank had the same sort of absolute concentration on his own agena.

She labelied this phenornenon mental orbemlin and relatexi an episode, where Frank was
absolutely detenaiaed to lave his place of midence, and there was no hope of dissuadhg him

despite possible dire comcqmccsSo, Fronk [sic]jwt (Snaps haa s )

inorle up his minci t k war if. He w m 'tewr

going back tkre- It was ChrfStwmsholi&ys. Inc worket had no other place for him. Nothing was set a p . Frankjus? lie u&h grabbing hdd of something k war lemtfng town And he di4 and l helpd him esccpe! He phoned me ami said 'Tmmt going bock to Sel& [sic] and Pete 's [sic] ."

l mean it wac like he lrrd a glas h l on He jwt knew k could not stay in that
situation. And he was going into thb i
~ siruanion v which wasprettyfighteningjor

an

eighteen-year-old: to p c k hU bugs, ta& a bus to &boon [sic]. He hano money. (7 lent him the money.) And he ha no place to corne back to. Andyet he was so . ..&ben with if. JILI~ sofocused on if.

I mean it al1 happeend within hours. A d Ipicked him up af their home. He

packd a bug. She suspected something and he was dever enough to thnnv her offtruck
saying he wasjust gofng to sleep owmight.

You h w , it was really interesting to watch him. The d~aerence between his
plans d
a kid who mqybe didanthave Asperger S was thm he was sofocupd It was

just going to silccee<l no maner whm. Ymr couldjust sort of envision hiin/lyng through

the air and Anocking ewryrling .. . . You bww,ho wasjwt sort o f oblivi01cs to the rest o f the unfwrse. Get to where he wcas going und it dih'f mutter how fightening or potentiuIIyjFightening the situation WPP or anything e h . II's almost like mentu2

adkenalin.
Teacher Assistant A also wticed Frank's egocenric concentration on his own agenda. She

92

describeci him as being wrapped up in himseE s a * :

"He newr redly chu~ed in the lurlwuys.

He WPF sort of zmming in d z o o m i n g out andfust doing hi$ ownu'sort o f lMng in his own
wodd his own t i ~ t a b l e ".

This autistic orientationcan secn i n the interviews that I conductcd with Adolescent A
and Adult A. 1found thgt it was WfiCUIt to interview Adolescent A. He did not seem to

understandwhatIwasaskinghim. Ihadto~brastqUtStioll~md~ethtmveryconcnte,so
that he would answer them. Even so, hc tendcd t o turnthe conversationt o his nivoiirite topics.

He said that he had a story to teii and he asM ifhe oould tell ajoke. H e did not seem to

understand the interview process. The interview was paricularly difficult at the beginniag, when I was trying t o get him t o explain what having Asperger's meant to him. Hem i s how he resisted
my questions and attempted t o divert the intemiew into his topics of interest: Ir

Some people have told p u thut you have Asperger 's H o m e . How do you think
Mects you?

that Asperger 's @orne A&

1:

Not a heck of a lot.

Not O heck of a lot?

MmmmHmmn

Ad:

k
Ad: 1:

H m wouldyou k dzrerent i f p u didh 't have it?

Thm's a htard question, Yeah, I ' m gohg to askyou some hard questiow that p u need to & some thinking

for.
Ad:

H m would I be dzflerent? I don 't hm becoure I hawn 't h w n unything

LAd:

You clbn 't hovc any -ses

h m you w d d be dferent?

Not red?,. h

e I'w nwt e w n t h g h t about it-

k
Ad:

WeU, y r m thnk of i?2 -

on, tel2 wte.

Yeair,I ' m too bvsy thinking rrbovfpmtyiig cind al2 that @to wony about st@

like that

I=
Ad:
1 :

Are p u ?

Yeah.
Ifsomeone askyouwhat Asperger's syndiome me-,
what do p u tell them?

Ad:
1 :

I realZy don 't hm.It seems to be s m e knd o f clinicd nume tag.

MmmmHmmm. O.K.h t &es it mean to p u ?
W k t does it mean to me? Ha Ha I've got a stoty that is Q bit more soulfi2.

Ad:

Although I found the interview witb Adult A to be l e s difncuit t h that with Adolescent
A, 1also thought he tendcd t o miss the point of some of my questions. Fmm thne-to-tirne Aduit

A seexneci to be giving pat, rchclwed snswcts. When 1asked Adult A what Asperger's meant to

him he gave me the v e y undersandable answec ''1used #O think thut ifmeunt p u baicallj were
shunned, you d i h 't ?me much hopfor o normal life " ,but then he mnt on to give a long

ofation about the position of those with atism i n socicty and g o v ~ c nhding t for special needspro-g:
A:

And I redze now that thut's dzfere~, and I thinkpeople are getting inore

accepting of that now. Still have iwny groun&, many gains to m 4 k tthough Society in general d w s not have emugh insight intopeople with Asporger 's @orne.
And even

with people with autism in general. People with discbilities raentow should 1say

94

it?/thqy 're cast kneath the n a & by S

O C I ~ ~ ~

chose to let themselves be, or ifthey

don P how eltoughpeople sportiig t k m

LA:

M m i n m H i But, you think if'sg e t t i n g better?

Unle bits,

ZittIe bits, it k Tlu on&problem, the on&problem right now. mrd

acncoIl) whm fs getting worse, b ~ r m n e n t j b i nfor g spectal nee&pogrmtl~is being

reduced all the time. And tihm inoks it tougkr to spread the messa-.

W e an having to

jhd more creative wuys in which to dO tiUR Because, unfortmate@,we do not lune a lot

o f s q in ~ w?uatthe goverment dws, as erymc c m see. BasicuI&, ymc elect them?and tkn, well, it dwsn 't reali'y matter once they get in, theyjwt do what they want. And that 's a
sadfact.

1think Adult A misintapnted a question that 1d e d about interactions as an adult end that he

thought 1was asking about dating situations or s

d nlationships. Adult A lwked

embarrassed and uncornfortable during tbis sequace of our inteniiew:

1:

men yodtoizy, as mi arhrlt, whor do p u stilt use thatyou Zemed in the

progrum, or mbefiom Teacher B [sic], dout interacting with others?

A:

Wouldyourepeat that again?

I:

L i h now. ap un adult, ummnt. w k n you me going to interact with someone else,

what do p u w thutyac leamed? A:

W c h ("a*)

m u * )
A:
1:

Kopefili) my chrismu.

0-K. Oughs)

A:

Asmniing lhrrw aqy.

u was an embarr~~~sing question. U'i

LA:

Yeah, that war. Iwas caught maw0e.

I=
A: I:

MmmmHnunm.

So.
Well, i f , , u werdscry if' were planningjwu wanted to do something with

someone. What woufdyou do? Lke wouldyoupim if to be an meni. and yw 'dgo somewhere a d do something?
A:
(ta+)

Tlirfwar another one.

At this point, 1ied one more tirne t o ask him about initiatig social interacions, and Adult A

replied by tallring about the ~Wcuity he has with dating. 1sitnnised that be thought 1was talking about dating ail dong, when 1just wanted to know about his g e n d interactions with other
people. The process ofinterviewhg both Adolescent A and Aduit A was complicatedby theV

difficulties in undemtandhg the meaning of my questions and by their egocentric frame of

reference.

Thcn are severe impairmats in social and occupaiod fiiactioxhg for the individuais
with Asperger's syndrome W h o I have dtscncd i n this peper. 1have a h d y detailed the p
t

deal of difncuity thiit adolescents and duits with Asperger's have in initiating and maintaihg
iendships. The participants in this study agmd that not having @ends is a cornmon problem

for adolescents with Asperger's syndrome. Adult A dqmaely wants to start dating, a normal
desire for a twenty-th-year-old man, and yet he atimits that he does not know bow. Adult A

cannot date kcause he ha9 difficuity litiating and maintainkg a niendsbip and he la& key social interaction skills. Not having &iends is a m e r e impairment of social functioning for any

human being. It is cspahlly dmm@thgin adolcsccircand d y duithd, whcn thae is a

m n g desire for pa rclatidps.

There was scrious disapement by the participants with the fourth criterion of Asperger's

s y n d r o m e in the DSM-N, U(d)There is no clinically sisnifiant general delay in language (e.g.,

singie words used by age 2 y ,

oomrnunicative phrases wd by g 3 y-)

(American

Psycbiatric Association, 1994, p. 77). Lie rcsearchers and clinicians, beginmng with Hans

Asperger, the participants have noticed Bculties in language development i n individuals with Asperger's. T h e r e are two appccts to tbis disagreement with the lack of lariguege delay criterion
listed in the DSM-IV.In some cases individuais who are now diagnosed as having Asperger's
syndrome did not speak by age 3 years. The o h aspect of the disagreement deah with the use of language to cornmunicate. Aithough individuals with Asperger's may have spoken by age 3,

they may not have been using language for mcanirigful c o m m u n i c a t i o n . Participants point out
that individuals with Asprgcr's continue to have dificulty using and undastanding the

subtleties of meaning in lmguage.

When Wmg (198 1) developed a clinical descriptionfor Asperger's syndromeshe noticed

that slightly less than half of the children that she described as havin$ Asperger's syndrome were slow to talk. Frith (199 1) allows for both slow language development and odd language usage in

97

her dennition of Aspagdq stathg: "Pmbps the main fature of children for whom we propose

the label Asperger syndrome i s that they tend t o spcak fluently by the tirne they me fivc, even i f their language developmait was siow ta kginwith, and mnifthcir ianguagt i s notialy odd
in its use fot conunddon. Some oftbaac chiidmn show dnmdc UnprovCmCIIfS despite

having had sevae autistic symptoms as toddlersn(p. 3). One would suppose that cbildrcn, such

as those rcported by Bowmim (1988), Gi11bag (1991), and Wng (199 l), dhgnoscd in eerly childhood as aiitistic, and thni rediagnootd as having Asperger's syndrome at a later stage of development had iittle or no language as todlers. Parent B redis t h t language, as weii as al1
other aspects of her daughtcr's carly devc10pmc11t,wss delayed and t h a t , when Jane did k g hto
speak, she would ody speak ta Parent B. Only one of the four chiltiren, who Aspager
(1 9Wl99 1) used as case studies t o represent d s m , schislly spoke before he tailcd Early

language development does not appear to k a set criterion for Asperger's syndrome.

Speech and Language Pathologist A test escxibe the rtsavations tha people, who have

had experience with Asperger's s y n d r o m e ,bave about a criterion that states tbat there is no
clinidy signifiant gcneral delay in language. S b cmphasizes that the communidon deficit

of those with Asperger's should k rddrrsscd i n diagnostic critnik.

I want people to tntcierstund ihat w k n they r e d in DSM-N; thot Asperger's has thai
Iangucrge dowlopment, thut thaf dwsn't man t k they huve rcllieqtuate communicution

CieVeIopment. Becaise communicrrtr'on, lreally &fiel LI one of their big defiits. m e n

p u look a t comprehendhg language, mt in reIrrtt'on to word-word-worrrl, but wordr in

relation to eoch other, I think they do have d ~ ~ d t i e s .

Some of the difficuities tbst people with Aspaeer's have with communicationhave ken
describeci underthe hcldiqg Quaiitativc bpaiunentin Social Intastioninthis paper. Speech
and Language Pathologist A gave the foliowing cxampies of the diflFicuitics with cumm\mication

that she saw in the h p a g e of the ha first client with Asperger's syndrome:

He intepreted idmas, orjoks. w y IiteruZ&. He intelledllecft k m I mean, he

would onolyzejoks, rather t h ttnderstanthem by their context..

He hod d z 3 d t y with usingfipative Icmgurrge an with metaphors.

f i n onything was conmete, k wasjlne at that k t e was a huge gap, when it came to abstract lmguage usage.

He hod to have one piece o f idormatiortpresented to him at a time.

He di& 'tshare psonol in@mution a d he never wed &ing
that was

emotioml zvpe langrrage. l k y hm>c d i f l d t y comm2micatingfecinglarrguuge.

He just maintoined his rivet of thought. You coulh 't intemqt eirher. You
couidn 't intemipt him becouro k would lose the heand of his thinking or of what he hud
to sqy.

It was thut socrp bm Aind of thing the o r a t o &pe ~ of lmguage, as asppsed tu the

give and t a k .

And then t h e wm that monotone qwlity, too. And there wasjwt a lack of colola. as well, w k n he p h . Although Asperger (1944/1991) omphasmi the originality of the Isrieuege of childm with

autism, he also asscasd that the "contactueating cxpttssive fiinctions are deficinit i n people
with disbirbed contact. Ifone listms carcfWy, one can inV8nably pick up these kiads of

abnodties in the language of autistic iodmduals, ...."(p. 70). I n an attempt to explain what

99

is lacking in die langriage of somecme with autism,AsPerga (1944/1991) describeci what is

usually e x p d and intnprrtcd in i n ~ n acommunicaiions: i

Languagc acprrsses intcrpcffonal reiationships as much as it provicies objective

information. M ifor hstance, can be dmcuyaqirrssedi n laiisuage. WCcan hem

h m the tone ofvoioc what zclationship pooplc have t o cach othcr, for iastrince superior
and subordiaate, and whcther thy arc in sympathy ot dpathy. This i s t e p d l t s s of the often deceptive content of the words themselves. It is this aspect of language which teli

us what someone & y

thinlrs. In this way the pcrccptive listenecan get behind the

mask. He crm tell om an individuai's cqmsions wbat i s lie and tnith, what are empty words and w h a t is genuinely meant. @. 69)
It i s exaaly the pemeption ofthe communicatedm e s s a g e that individas wth Asperger's

have dEculty with. This is why rcsearchers say the.lack a theory ofminci, they do not attend t o
what i s relevant, and that they have a relational deficit, This i s also why professionais who work

with individuals with Asperger's, like Tacher A, notice, "Theyjust dbn 1connect in a normal
sort o f wqy- " It i s also why parents of children with Asperger's are hurt by their chilcen's

inability to do wbat most childrcn secm t o do nahirally, leam what plcases and displeases their

parents. It i s aiso why individuals with Aspergefs, such as Adult A f e l shmmed and alone.

People w i t h Asperger's syndrome have a gnat deal of difEcuity rcaing the intended message
and, thmfore, pemeivixtg what others an thinlring or feeling. They do indeed have a deficit in

the comrniinication aspect ofianguagc.

The ffh dirgnostic &taion of thc DSM-LV, "(e) Tbat i s m clinidy signifcant delay
in cognitive developmat or i n the devtlopment of qeapppfiM sewhelp sLls, v e behaviour (other than social interaction), and d o s i t y about the environment in childhdn

(Amerkm Psychilrtnc Association, 1994, p. 77). i s another DSM-IV diagnostic aiterion that
may not k exactly accurate for those with Asperger's. Some aspects of cognitive devtlopment

may be delayed because children with Aspagcr's aie not abie t o lcam h m relationships with other people and with the envitonment i n the same way that non-autistic childm cen. In
addition, an egocentrc view of the world and m insistenceon following one's own agenda may

limit the leaming of se*hclp skills and adaptive behaviours. such as groomingo Tbitdly,
curiosity about the environment may be limited t o certain areas of interest.

Asperger (1944/1991) has a number of observations about the behaviour of young

chdren with autishic psychopathy that sean to indicate a generai delay in development. He

comments that i n early childhoodthe characteristics of a\distic psychopathy are manifested by

"difficdties in leaming simple practical skills and in social -on"
@. 68). He al00 explains

that the egocentric agenda of chiIdrcn w i t h autim lads to wnflicts in the home over asic We-

SUS aud conflicts at school over Ieaming the curriculum and following the des of the
clasmm.
In evaything these children follow their own impulses and i n t c r t s t s regardless of the
outside world In the family one can laqeiy djust to these peculiarities in order to avoid

conflict, and simply let these chilm go th& own way. niy when it coma to the daily

101

chores of getting up, getting d

.wda@ d ertuig do we get &mc&rMc ciashcs.

is heavily

i n school however, the f i d o m t o indulgc in sponancous impulses and in-

curtaed. Nowthcchildisatpedtdtositstill,paygetenti011d~@o~. ( p .

78)
Asperger d s o dcscrii stcreotypic aaivty i n young cbidnn with autistic psychopathy, notiug

that they may spcnd hom absorbcd in "momtomus play w i t h a shoelanor 'Vonnirig pattemed
rows with their toys" (p. 78). Onc would think that the autistic absorpiion in stereotypic activity

or in foilowing an egocentric agenda wouid iimit cognitive developmcnt- CaCainly Asperger's

syndrome is considercd a pavesivt dcvelopmental disab'ility.

Both of the parents of cbildrtn with Asperger's syndrome, who 1intcnicwe, noticed
developrnental delay in their childrta Parent A note g e n d developmental delay i n her
daughter as a young cbiid. Although Parent B was amazcd by the verbai skis of her son,
exaggerating to emphasize how unusualiy eerly he M

e : "Hewus h m tdking! '!': she also

demibed how Bicuit it was to teach him basic self-help skills. Martin's histence on foilowing bis own ageeda meant that he hed not lcamed alphabctica orda. or how t o give
change i n monetay transactions. EncouregiDg Martin t o eat healthy foods and t o keep himself

cleau were constant struggles for his parents. Ldto his own deviccs, M a r t i n would eat a
package of proassed m a t for lunch evay day and wcar the same pair of jeans for weeks at a
time. Trying to change Mertin's behaviour would usuaiyremt i n cxfteme mistance and anger

from M a r t h Paient A exphbs the psychoiogical stress diat was involved h trying to ive *th Martin and tcach him basic self-helpskills:
Anywq, Idon 't know how to describe ft other thm high maintenance, the effortin t e m

102

ofpovidmg s q p r t to himfor the mos mimrte &taiIs of Ife, d w q s m n g a &pendent

child and not seeing gmwth, gthings don'tgo wellfor him m the mornjng ifhere Ln 'te-gh hot water, as

he thinks k should h m ,or tfsomeWj I o a k sidewqs a t him he 's sril1 wqy much

involved in bis mon Ife. He dwsn 'thave a sense o f how k c d d m&ate

his

behavimfor those he ir living witk L M g with someone likz Miartin [sic], p ujust

haw to work al1 the time a t reciLcng the moments offiction and anger, anci it takes O lot
of energy. Both Jane and Martin have aireme peaLs and d e y s in heir d e m i c and psychologid profiles, indicaing t h a tthey are developmentally delayed or irnphd in some
areas of cognitive bctioning and aiso that they have cognitive stmqh. lbkh's

mother,

Parent A, reports the tesults ofa series ofacademic tests that Martin was given in Grade 4 ,and
their implications for diagnosis:
There was thhprofiund mevenness in hir skills cnd hls krawledge, dght upfiont Grade
4 ta universi@ Ievel. Sonre skills were woy belm grade levol.

For awhile we thought that t w u a Zeaming dirabili~ md hisjhsaation with

this tmevenness and lack o f integratt-on But thingsjast never got better. Thq, jwt ahvays got worse and t

h w a this ~ pedbminant i ~ b i k t to y redfiom sociaI

aicumstances.

iane's mother,Parent B,expisins the arcas of cognitive Wt81CI1tss tbat ber eightcen-ymr-old
daughter displays, despite beiig an excellent nmmr, a talented artist, and v M y tuticdate:
She has a lot o f trouble inteqweting her worId For a m p l e , she isjust beginning to tell

103

time, d s h e &esn

't even cdo it r3ght all the time.

And moncy. s k 's Zeatning but it 's

v e v slow. And slw colclth 'ta and bPry a car. Sho coulrlh 'tgo 4nd bw, wefl even o

SIurpy or sometking li& that. She w d d get vrry conjhed S e would have to be
scriped to do t h , and evem then, ifshe gof dilstracted it would Oc red& hcad Sb the

money, the time, &tes. Shr dasn'tseem to hIvc a seme of whether thngs me a year in
advance or two weeks in om)cmce. it &esn 'tseem to mean onything to k r .Sb I think

she has some serious cognitive dflcits, which don P help her commtuticmion

The egocentric autism ofindividuais with Asperger's syndromemakts it difiicuity for them to

leam h m other people or h m the envllonmcnt. Martin and Jane am both skilied v d y and
yet they also both bave proformd academic wcaknesses. Somehow they are not making the

cognitive interpretations tha lead t o understanding of concepts like time and money. Asperger's

syndrome seems to have caused a delay or an impairment in their cognitive developrnent.

PDD or

As 1have mentioned thughout this paper, the diagnosis of Asperger's syndrome is both
controveimal and clifficuit, Many aspects of Asperger's syadromc are identical t o those of

autism. Many symptoms of AsperBcr's syndrome are also seen in other disorciers, such as:

Obscssive-CompulsiveDisorda, e n d Anxicty Disorder, Schizoid Petsonality Disorda,

Childhood Schizopbrtnia, Attention Dcficit Disorder, Mental Rctardation, Dmlopmaitai
Language Disorder, Sematic-pragmatic Disorder, or Leamhg Disebility. Paople who are

diagnosecl as having Asperger's syndrome bave o h bad prcvious diagnoscs, and thac may be disagreement among cliaiciw and profCssionais as to whcther the diagnosis of Asperger's

syndrome is accurate when it is given. Neither Jsne nor Martin w m diagnoseci as having

Asperger's syndrome MtilGrade 7. Riorto Gnde 7, J~QC had ben iabciid as having
Obsessive Compulsive Disorder, and Matth hdkcodiagnosecl as having a pc~sonaiity

disorder. The teachms inthe Autism Rogram aw aspects of Maion's pmmtationtbat did not
fit their pi-

of Asperger's qmhmc. Lecamng Disabled and Aaention Deficit Disorder were

cunsidered as morr accurate iabcis for Martin. DBhmtiation ofAspager's syndrome k m

other disordcts continues ta be d i f & u k tbroughout the life-tme of individuas with Asperger's,

as secondary symptoms may beginto cloud the clinicai piaiae. Asperger's syndrome i s indecd a
COntroversial

diagnosis.

There is a great deal of confusion in diffnntiaing Asperger's syudmme and autism.

Although Asperger (l9Mf1991) mention& ster#,typicbehaviour, such as rhythmic rucking, and

described the child with autistic psychopathy k i n g "Like an alien, obiivious t o the sumunding
noise and movernent, and inaccess~'bfe in bis preoccupation" (p. 78)' this piautistic isolation i s moR typically thought of as Kanner's a . -

of extreme

Parent B explains her

diiculty in understanding whethcr hcr daughter has Asperger's s y n d r o m eor d m :

Inewr realty krow wkther to say J e [sic] hm Asprrger 's or aulism. She has a lot of the characteristics of -tic
doesn have.

people, art t k e me lots of those characteristics t h she

She di& 't spin m

d as a cMd Although, we 've lmkd back in baby

books nmu and noticed that we mots, 'Vine [sic] rock back andforth in h e p bed "
Speech and Languagt PathologUt A bas ha own intuitive way of rccognimng people that

she would categorizc as baving Asperger's syndrome. She thinlrs that Asperger's s y n d r o m e is a

PDD and that it bas feeturrs in common with autism, but that autism and Asperger's syndrome

105

are separate disordem. Genaally,

perceives popk with Asperger's as having right brain

deficits and people with autirni as havhg left krin& f i & .

She would not consider Jane as

aving Aspcrgcr's syndrome, eva though that i s Jliw's prrsmt diagnosis, because Jane has

excellent motor cooidiniition, kiiig a skiiied athlctc. S b iIso intuitivtly bclicves that Temple
Grandin ha9 autsm rathcr than Asperger's sywbrnt. In otda for Speech and Liaiguage

Pathologist A O categorizc somcone as having Asp%a's syndrome, he or shc wouid have to

display:

poor motorcoordination
lefi brain strength-being able to pleik out th0 trees in theforest right boin deficits-not king able to see the w k l e p i c m

poor timing in reading socid situations oratory-rn speech-soap-box swe

verbal strengths

intelligence antugonisti'c qualifies.

Teacher B has seen the diagnosis of the chil-

he teaches change h m Chiidhood

Scbizopbreaia to autism t o Asperger's syndrome. H e says that he does not iike to categorize bis
shidents, and tbat a label of Asperger's syndrome may acbually k more detrimental thaa that of

autism, because it brings with it the paception of aboi@ and compettnce, whm major support is
requirrd. Howm, if he wcn t o d e 5 e Asperger's syndrome, hc would use degrcc of abiiity and

degree of autism as crieria, stating:

Iguess you see them us sort of a higher level, so t h their ski11 lote1 seems to be a notch

1O 6

abme d the otirers*Andyet thq, stiI2 have th0 cornmimication dffjicties, an they d l

have the SM inercuttiv d@kdties, a d the pmblem-solving diflcailties. It jlcst seem

to k that thry on more naad in d Inu d t i c , less witlin themsefvcs. Sb thar 's

pobob& the greatest ~ n g u i ; s h i nf4ctorg

Teacher B's paception of Aspagct's syndrome as a subtle fona of dm, fits in with what
many researchers (Gilibcrg & Olbetg, 1989; Szsbnsri, 1991; Tantam_ 1991; W i n g 1981,1991)

have reported.
Win$ (1991) g i w s a dkshingiy honest assessment of the chaos that has developed
moud diagnosing and diffitiating autism and Asperger's s y n d r o m e . She believes that

Asperger and KaMer w m probably d d b h people with the same basic disabiiity, bui that

there were slight dB-ces

in the populations that they chose to snidy and that each man

presented his case studies with a siightiy d i f f i t empbasis. She gives an anaiogy h m music to

describe the resuiting chaos in diagnosis and classifcation:

It is as if some gmups of people believe they are singing the same song but each singer
has chosen a diffrent key and some have changed their keys over tirne, M

e other

groups are d

y singiiig the same song but each singer bas called it by a diffcrrnt name.

0107)
h o are sociaiiy impairod i n t a Wing (1991) describes the dificultics of yhg to fit childrai W
diagnostically acoeptablc categories.

S k describes the following problems i n catcgoruaton:

First, the longer the List of essential diagnosticcriteria, the fcwcr the childm that w e r e
eligible* Seconiy, although it was possible t o identify the diagnostic criteria d e n present in typicai forni, for my item thm were pblerns ofdelimiting the borderlines.

1O 7

niirdly, the Cntaiafor dincrent syndromesoverlepped so much rhat some childten wuid

k givm two or more dhgmws. Fomtbly,mmy childrea had mktms ofnaRirrs h m

diffcrcot syndromes and couM not k fid prcciscly into any diagnostic catcgory. The

more narrowly the critcria were dcfmed the f m the cbildrcn tha! wuld k includcd
@p. 109-110)

Whether Asperger's PyaQome shodd inc1ude pll of the pople within the autinn
spectnim who are presently verbai and attempt d a 1 intetaction, or whether it shouid be Iimited
to poorly coordinatsd, pedantic, intelligent, cerly talkers, who iack social intuition is perhaps a

moot point. Both groups have a social interaction deficit that I &

to be eddrrssed Pahaps the

value of king givm the diagnosis of Asperger's syndrome as opposeci to thet of autism should
be considend. Teacher B klieves that Asperger's syndrome may be a dangemus diagnosis
because it leaves individuals without the supports that a diagnosis of autism may pmvide. Wmg
(199 1) believes that the diagnosis of Asperger's s y n d r o m e is uscfid for two reasom. F h t ,

parents may more reaily accept the dhposis of Asperger's s y n d r o m e for thev child than
autism, since Uautism is, in the rninds of many hy people, synonymous with total absence of

speech, social isolaiion, no eye contact, hypemctiviy, agility and absorption in bodily
stereotypiesn (p.

11 7 ) . Sccondly,the recognition ofAsperger's syndrome i n adults has led t o an

understandhg that autistc individuais of n o r d inttiligcnce can k 'mdiagnoscd in childhd

but be r e f d to a psychiatrist in adult WC''( p . 117). This has led to an awamess tha untreatable mental ilincss msy actually k Aspger's syndrome and aiso t b the pmblerns with
Living that are encounterod by someUne with a dmlopmental disability may lead to

psychological distnss and possibly secondary mentai illness. Ifa diagnosis of Asperger's

108

s y n d r o m e lea& to m e n t of social interaction deficits and ea aWBirCI1tSS ofthautistic

chatacteristicsof the individuai with the iagnosis, Asperger's s y ~ i h m i e s a useful diagnosis.

Both Aspagn and Kanncr wcn clcar in thcir diffc~clltiation of amkn b m

Schizopbrcnia, stating that th& clients with autismdid not hallucinate, appard abnonna1 h m
their eariest yeara, and showai Uaprovemeat m t k t b deterioration (Happ, p. 11). Sula

WoEand her associates (Woln& McGuirc, 1995)iink Aspcrger*~ syndrome and a disorder they
have labeiied s c b i d penonaiity disorder, n o -

the similarities in f -

betwccnthe two

disorders. T h - is a historical, diagnostic link bawcen Asperger's syndrome and Schizophtenia for the participants in this stuy, with Tacher B sating tbat over the years the diagnosis of the children he has taught bas changed h m Childhood Schizophrcaia to Asperger's s y n d r o m e . Schuophreniamay have been the diagnosis that was given t o these chiidren before the mid
1940s, when Kanner and Asperger introdwd autismto the world S c h h p h d a pmbably

continueci to be diagnosed for many years a h 1944, for chiidffn who m e t Wiiig's (1981)
"active but oddn criteria, and for pmiously M d i a g n o d adolescents and edults with Asperger's
synbme.

A comment about the diagnosis of obscssiv~l~~mpuisivc disorda and Asperger's shoud

be made h m . Jane had been diagnosed as havingO h i v e Compulsive Disordcr prior to her

diagnosis of Asperger's syndrome. Many individuais with A s p g e r ' s or sutism do have persevaative thoughts, dweiiing on kir topics of intaest to the exclusion of aii else. Sometimes they may be able to go off into their own worls so successfuily that people believe

109

they are deaf. Pamt B told me that this wm tw of Jene, who was a c t d y tcsted for deafhess.

Fmm my expericncc ofwodriiig with Janc as a teaicher assistant, 1told h a rnothtr. Icrm
derstand what thqy'vc brrn soying &ut hm king d k d kcause she seewts to go awqy. When she gets something thut s k 's tMatng d h t orpwseverrdr*ng on, she 's gone. Parent A thcn
explaineci how kdaughter sccms t o k at war with the -Id,
A n d p u c m 'tget her back And fyou
hy to get

le Donna Williams:

her back s k gets u n m . Y m kmv.

because she 's obviousiy thinking of soinethiring thut 3 so important an so compelling to

her that to get hm back real?, 2s almost like i d i n g her world

DomM Williamstalk about k r war with t k world And when Irea her book, I
realtyfelt that t h 'Jthe wqy Jne [sic] mtcptfeel, that she Ir at wm with the wotld And that world i d e s on her, in what she 's doing d what she/ees com@led to t h i d
And it distaubs her and makes her angry. And so I c m see why Donna Williams would
c d it her wm with the world

l k 'J exact& how Jne [sic] striks me a lot of the rime.

People with Asperger's syndrome and aiitiSm want to thinL about theV repetitive thoughts, unlike
people with an obsessive-compulsive disorder. Pcrseverative, rqetitive thoughts are part of their autism, part of why they scem isolated in tkir own worlds.

The participants Li my interviews mentioncd s e v d f

w that they use to identify

individuais with Asperger's s y n d r o m e that wcrc not mentioned in the DSM-V cagnostic
criteria Teacher A used hcr ability to intuitively sense a M e r , as part of a qualitative

diagnosis. Speech and Language Pafbologist A has consistently n o t i d antagonistic qualities in

individuais with Asperger's syndrome, and she wonders if this should k part of the diagwsis,

110

but she dso linLp the antagoniSmwiih the fiusmiontbat people with Asperser's mwt fal. Teacher AssistaDt A, Wrc Asperger (1994)' wtcd malice i n the khaviour of some individuais
with Asperger's. Tciieher B uses the inability t o pmblern-soIve as his nmbcr one criteria for

diagnosing Asperger's syndrome. In this section I will addrecrr the pnseaa ofmslice in
individuais with Asperger's and the pmblem-solving dencit in those with Asperger's.

One aspect ofAsperger's (1944/1991) description ofchildren with autistic psychopathy

has not kenqcated in the diagnostic cri-

of o k resauchers and clhicians. Asperger

interprrted some of the khaviour of his autistic chilckn as king deliberately malicious and

spiteM. He rclatcd the following description of F e saying that his mischicvous acts were

characteristic of this type of child:

The same boy who sat there listlessly with an absent look on his face would suddenly
jump up with his eyes L i t up, and before one could do anything, he wouid have done

something mischievous. Perhaps he wouid knock everything off the table or bash another cbiid Of course he wouid always choose the d e r , more helpless ones t o hit, who
kcame very Pfred of him. Perhiips ht would t u m on the lights or the watcr, or suddenly;

nm away h m his motha or anothcr acwmpanying duit, t o be caught only with

diflicuity. Then again, he may haw thrown himself iato a puddk so thes he would k
spattered with mud h m htad t o fwt. These impulsive acts o c c d without any
wamhg end mrr thacfore CXftCmely ciifficuit t o manage or control. In each of these

situations it was always the worst, most anbenassing, most dangcnw thing that
happene. The boy scemed to have a special saw for this, and yet he a p p d to take

Ill

hardly any notice of the world m i m d bim! No won& tbe melicious khsviour of these
chdren s o o h appems altogethet 'cplculetcd'. @. 43)

Fnth (1991) notes thc dhaqmq betweuaAspagcr's contention thst thesc chilrcn
were indiffetc~lt t o the f a -

ofothcn and bis klicfthat tby would be deli'beiattly rmlicious.

to his behaviour, ratber

She contends that Fritz may have been looking for a physical & c m
than a psychologicai one. She reports that Fiia d

y nrGnittedtha he cnjoyed seing a display

of anger on his teacher's b . Mugtuet Dewey (1991) has a similar explmation to Frith fot
apparently spitefid behaviour by autistic chdren. She views m o s t of this behaviour as motivated by an interest in the physical d o n h t d t s . I D ~ g I yTeacher , Assistant A describes

Frank as displayhg cruel, malicious behaviour, but she aiso cTedits his motive as wanting to see
a physical reaction.

Teacher Assistant A deScnbed how Fra& would get into a mischievous kind of mood and
do things to get people anotionally stined up. She believed that he wanted t o see people's

emotional miction, but thst he was not awme of how they might feel. She describeci some ofhis

behaviour as cruel and stated that he finally stopped this type of delbemte baitingd when an act of
severe cnaelty shocked -one

who lcamed of it, including authority figures, who were

important to Frank. It sccms that the malia that Asperger d e s c r i i d the crutlty that Teacher

Assistant A detailcd could be expleincd as an interiest i n a physicai d o n rather than an act

intended to iUicit emotions.

Tacher B uses the ritcrionofpoblem-solvhg abiiity to decide whdba a student has

Asperger's syndrome or not

H e belicvts tbat sotneone would lrsprger's would have a grcat

deal ofcWiCUIty plininiiig a pmjcct ad thm complethg the proja by putthg d l of the picces
together in the correct order to rrach SUCC~SS. Tgcha B exp-

%eydon 't have the w i m u i t W top h acces#l&.

@?lep to th& own &ces,

it 3just

newr gdng to w

n niey don? b u e the wherewitha! tu sqy. "Ihaveto set time iines

for myse& l have to romplete a b, c, and then do 4 e, $ ' Ifsomeone came into a sitwtiofi d could takefiorn step IDd thenfollow tlomgh on ail the steps to complete

one o f t k s e activitiesD I would be v e g very inrpcsed And one of nryPrst inclinations

would be to suy, 'Iquestionwhether thatperson is Asperger's or not. '

Teacher B aiso says that "IVhor they don 't have is the abiliw to see how the smallpiecesjlt
together to make the whole. 'Teachcr B ' s o ~ o nabout s hck of planning ab@ for those
with Asperger's syndrome wouid fit in with what mearchers (Frith, 1991; Happ, 1995) are

saying about the cognitive pmblans of people with cwtiJm and Asperger's. Rclcvance theory

makes sense h m . i fone i s unable to detemine wbich pieces of information are relevant for meaning, one c a ~ osynthcsizc t and analyze and cow up with en o v d plan. king able to
pick out aii of the dctails, but aot k i n g able to dctcrmine which dctails arc important, leaves one
direction less. Successful pianning is impossible.

Trtaancnt Plans for Molescents With Asperger's Syndrome

Dcspite the f &

that Aspager's syndrome i s cbamc&&d by an autistic fiame of

nference, relatioaships arc m e n t i d by cach of the participants as kiiigcrucial for the

psychologid health of aciolescc~lts with Aspc%er's syndtomt. It rppea~ that the bcst way t o
brhg someone with Aspcrger's into the wodd, is in one-xme carhg relationships. A

supportive, loving, one-to-ont nlationship c m give thc individuai with Aspcrgcr's a hcalthy self'perception, a mentor for intcipnting the social world, and a d e , secure base for malring sense of

the wodd. Individuals with Aspcrger's, iike Gveryone else, benefit h m a hdthy sense of self.
The social interaction deficit is profound i n those with Asperger's, so having a tmted mentor to

interpret social situations is crucial for growth in this area. In addition, people with Asperger's
seem to have a grcat deal of difIiculty with developng a mcaniugfbl s t n i c a m for &tir lives.

They s e e mt o be compelled to pcrsevtratc on thtir topics of interest to find &&y and to ground

themselves. Caring, o n t - t ~ n e relationships muid provide an altemative safe, pcmding place for individuais with Asperger's. A basic first step in developing treatmcnt plans for adolescents
with Asperger's syadmrnt i st o p v i d t cach adolescent with one supportive, 10ving adult, who
can develop an mnotional and psychologid p w t h e c i n g nlationship with the adolescent.

Both of the participants with Asperger's mentioned other people as king key supports in
their iives. When 1askd Adolrrcerit A what he thought of the AutUm Rogram and how it had

helped h i . he mentioned the p p l e that w m involved:

1 :

Whor do p u think of the program?

Ad:

Nor too &ad Tirc t e a c k s are-

g d

I=
Ad:

H w dbes if lulp p u ?

H m docr if h t @ ?
MmtmHrnm
Ah. it givcs nre some&&

I=
Ad:

to talk to, laugh with

I=
Ad:

hhnmHrnmm. Sb yvu like the people in the program?

Yeah If giws yotc oplace to go t m d p p l e to t& to and laugh wfth.

I=

Adolescent A thcn when on to talk about Tacher Assistant A, who bad been out of the schml working with a student a t ajob expience sight. H e cxpressedhow he missed ha.
Ad:

Y e d ,puttidm& Teacher Assistant A [sic]. which I don f really get to see much

of anymore.

I . =
Ad:

No. Thm 's too b4d I krow p i c really enjoy Teacher Assistant A.

Yeah
Well. wmcrybe @r Pamicio [sic] gets clone her workprogram. Teacher Assistant A

Ir

[sic] will b here more. Hope so. I miss her. too.

Ad:
Ir

Yeak
What wouldyou like to change aboufthe autidAsporger r'sprogram?

Ad:

I'd like to see TeacherAssistunt A [sic] on a more regular bais.

1thuilr that Adolescent A was tspccidy missing Tcacher Assistant A because she

providecl him with the d e , secure, growth-enhancing ~lationship.Teacha Assistant A hed had
a close relationship with Adolescent A, where she had spent a gnat deal of time M O Mhim ~ on

115
a one--ne

basis, taking t o him about dand exnotionai situations, and vesmiring into his

perseverative wdd. Adolescent A bad denloped a wbole cast ofinter-g&dc spacc travelling
c h a c t ~who ~ , hc thought about rrp<itivcly d who he built wcapons for.

H e plrwd these

charactasindiffehstsituaSioll~dtbenmderip~t~abou~whst~~~heppeniagto~rn.
Adolescent A was a l -

looking fm sameart to go hto t h i s wmld with hirn anci to help him

decide how his charaaas would nact in tbc situations he was h g i n h g - Tacher Assistant A
was willing t o Listen t o him and t o taik about how bis cchersctas might mact exnotionally. She

explains how she klims Adolescent A wants somcone he can trust to go into his world with
him:

He wants someone else to wmke the connecti011~ wth him, who has the apen'ence of the

world hisrory, society, politics, economiics, He wartts someone who bas Iike a broad range, who is compassionate. Compassion is one of the most important worWpsitive
wor& fhat ho haF. As well PFforgiwnss, generosi@. And some of the wordr that are

clebilitatt'on to him ore nroney d g t e e d

Sb,you knuu, he Iiar the good d the evil in his storiar. And he neeh someone
fiom the world thut he c m trust. And k dwsn'tkrow who k cm trust. He rea&
&esn % Everyone ?uu Iet hhn hin the h i c reI~n*onships in hk Ire. A d he 's been

abtaed He 's k e n takrn advantage O $

1think tbet T a b e r Assistant A was beginniag to provide a basic, usting relationship for

Adolescent A, t hhe couid use o cnhanct his sense of seifand whac he would fl saf to

leam about social and emotional interactions.

Addt A relies on Tacher B to givc him the support that he needs to get through life as an

116

duit with . S ' -

Hc rrgularfy asks Teachcr B for advice. For acample, hc told me that

dating was somethmg that hc shouid taik to Terha B about. Adult A ftcognbs that he needs

support h m sommne Lre Tacher B, and he would Pd+

adoIesccats with Asperger's t o find

someone like Teachcr B to give thcm support. M u l tA aiso rccopnizcs the important role that
Teacher B has playmi in his Me, taying:

And T e a k t B [sic] is more t hjurt a teocha to me. He 'J mon iik afiend And to

tell yoic the h~uth, dthough I &n 't think Ihave em toZd it to him, he is kind of like the

Dcidlnever had I mean l ' w gone over to hbplace. rve mowed his lawnfor him- I've
k Z ' d him clean the car. ImeI've &ne things like t b . I've gone on trips with him

I've &ne al2 thme things lUo that that I missed in nry chil<mwd wih niy Dod And Teacher B [sic] helped mefillpmt of that wid He made the d@erence in my life to
where Imn to&yg
As weii as providing a basic, caring ielationship and sacial advice, Tacher B gives Adult A a
structure for organizing his world. Adult A visits the Autism Program three or four times a

week, helphg with the flyer delivezy mute, using the c l a s ~ ~ to~ do ~community m college

assignments, eating lunch with people i n the program, and t a h g to Tcacher B. T h i s continued
involvement w i t h Tacher B and the Aidism Progmm gim Adult A a place to go and a prirpose

for each day. Tacher Assistant A believes that Teachet B is a "source of or& rmdsanity " for
Adult A

H e provides stntchm and an o

v d way of orgeniPog lif for Adult A.

Both Pannt A and Parent B mwgnizc the importance of caring, md-ding

people in

the lives of their children. Parent A b e l i e ~tha s dationships are key to h a son's futim. She

explains what he needs:

117

Hmng a g d reIciti'omh@ wirh him. I think thut reIatiomh@sare ky to t h , are k y to

him d h i p j b r e . He worh k t withpople who are wfllingto givc, gw, give, f i e ,

giw. And ifyou cmflndpeopte l i k that he will l e m mdmatutefiom those

relationships. ?ahuqps thug& kis Gr& 5 teacher na@ intuitive& f i e d on Martin

[sic] in tetms of the relationsh@. S e rea& offered him a Iot o f herseK A d 1 think he
did better as a r e d t o f thra t h ifhe W b e e n in a specicrlpogrant,

Parent B cornmentis the people who have kencaring and supportive of h a deughter in the past.

She is also weil awam that her daughttt wl need aicrgctic, loving people, who mderstand
Asperger's syndrome aud autism, supporting hcr for the rcst of h a M e . Pairnt B has been

workig towards gathering such a network of people for her daughter. She believes that

relati&mhipswith carhg, understadhg people arc key for her daughtec's fuhire. As Jane's
parent, she wouid ke to provide such a network. "Ithinkthe bfgthing that we 're m g to do
righ now is to get people mounJane [sic], who carefor heer and who will be with her through

her li#. "

Parent B has ncognized both the importance ofnlationships for her daughter and fact
that a number of people have to be involvecl in such supportive, uudcrstanding relationships with

her daughter. Parent B has aetcd as an advocac and as an interpretmof the world for her
daughter throughout her M e .H o ,

she rrazcs that Jane needs 0 t h people to 611 these

g for a child with

roles. Parent B hows the physical and exnotionai sain that is involved in d

Asperger's. She acknowledges that ncither sbe nor h a husband are capable of deaihg with the
stress that is involve with living full time with Jaae.

Panat B knows that her dsughter needs

additionai loving, supportive people t o act as her advocatcs and social interpreters. A network of

118

people to fiii these roles is

tlnoiigbout Jan& me9 today t o rciicvc th shaui on her

parentsandinthtnhirrtotakethcirplw.
A supportive iutwodr of QILC-Bivem saas to bc kcy in providing the one-&-one

relationships that those wilh Aspc~gds nad P ~ c n t d s ~ v e r s who , arc continudiy

pmviding support for thoa with llrpaeet's, d relief and emotiod q p o r t . Teachcr
Assistant A has chosen to leave the Autism hgcatn. Part ofhn decision to lcave was based on

the stress that she enwuntcred in giving houn of one-tolone support t o adolescents with

Asperger's. One person should not have cornpletc mponsibility for filljng the mies of mentor,
interpreter, and advocate. The care-given nced d e f and emotiody supportive relationships of

theu own in order t o give the all-cncompassingrelational support that those with Aspaeer's
need. 1thllilr that Parent B is comct in working to devdop a supportive network for her
daughter. The m o r e people who understand Aspetgct's and who are willing to give of

themselves in relationships with people w i t h Asperger's, the better progaosis there i s for individuais with Asperger's.

Each of the participants in my study rccognized mlationships as kcy in the trcatment of

Asperger's syndrome. 1have desaibed how Addt A, Adolescent A, and Parents A end B value nlationships in th& own liveo or in thc livcs of their children. T e a c b A and B,Speech and
Language Pathologist A, and Tacher Assistant A aii spoke about e s t a b i a ~relationship

based on respect, unconditi01181acptance, and aibmtion as the basis for b e g i .to work

with someone with Asperger's syndrome. Teacher A says hat: "Youhaw tu take o Humanisri

go o v e
Tacher AsgStanr A parcavcdtbe d that people with S

s syndrome have for

unconditiod cPccepIinoe.Md suggested thrt p d a p s a pet wouM provide thrt love, without the
complication ofv d m l communi~str*o11=

Tharebto k ~ ~ ~ e ~ ~ w e , ~ ~ m e ~ ~ r h m ~ f c L c r I m * s ~ m w k l l h e r i h a y

tmderstandormt T h o l ' s ~ ~ l oi w h r. r t i t w o u h ' t b r s o ~ d t o ~ d s r y r l r a

nght uiing. It 9eems t heninirrLpyindary caanrJ, some mimal that thisprrson hm
sonrc sort

~~w-th

These four people, who have proftssional c?lrpaience wodcbg wih students with
Asperger's syndrome, a rccognk the d u e ofestabshing relationships with them besed on
unco~iditioaal c e ,

rrspea. and affirmation. Tcachcr Assistant A reportcd F d s

response to positive regard:

Fr& [SicJjast qxzkleh rfyoup'd/rlrt a lilte attention to Frank [sic]. It

wouldh't t& much encmgement H e / i L nAqpd it up. He ~eecied rhrrt and itjast
made his & y .

Speech and Laaguage Pathologist A advised Tcacher B to give David a compmmt a day, when

Teacher B fist began workhg with David, as a strategy for begiiioing to build a relatioaship wth
him. She laughed and commenteci i n our intcmiew, that Teacher B reported a few weeks k a :
"

Well, sometimesyou have to giie him two cornplmen& a day. " Teacher A betieves that once a

tmsting, respectin&v a b g relationship has been estabtishe, she can begin to work with the

individual with hperger's. She explains the interdependence of validation, self-esteem, and trust:

To a h fhem 20 fee4 you how1fo vuIi&e fheirfeelingsond let them work thern

120

through I n C l l l ~ t I n i p a r l a n f r h i n g i 3 ~ I . t ~ ~ l o p ~ ~ - e ~ r e e m , m d a n c e d h m
hrpipcnsyarmnga M a r t o frhem m W b f r r s t a h t c n y r h r i g f ~ m e onithydo it

beeausr rlrcy irircr m e .

The four -1

personnel tbuad that t r d n g studern~ with Asperger's with tespeq by

valuing th& cornpetence, was another way of budmg the reiationship. An d v i t y whae the

school profdonal askcd the individualwith h p c q e r ' s for hdp or d e n they were simply two
human beings w o -

togetha, they thought was partichly beneficiaifor the selfcsteem ofthe

individual with Asperger's. Teachcr A regards the episode where she and Aduit A helped Frank
lave town as one of the best sociat intesactions that she has ha with an individual with Asperger's syndrome because she and Aduit A wwe quais, worlaag together for a common goal

She explains wisy she thinlcs this s&ai interaction wru succasSnil:

When we went on our adventure m-thFrmk [sic] tkre was a reai seme o f team work
between u s ard a natwaffluw o f things He w m 't the stuctent or the ex-sfudeni.

W e

reufljworked well ma tecm and hefeit wry good And rhore was a lewllng, just dnnt
to two incintiuk.

D o m kDW whui I mem?

1clarified what she meant and our conversation continueci:

1 :

So, yoir 're saying thut why it worked well was because you hcod a common

pupose?

TA:
1:
TA:

Yeah, a commonpurpose.

Andyou were on the same levei.

Yup. And there was o muiuui respectfor what the oiher one 's role was. And it

121

w a r u m l e o u r J f 4 l o f ~ IYarbmv. t Y~dahrrewu~apdonondapurpaa Andl e~

tMnk~wnorldkcyipqnicribfo~any~~~&
One ofthe st1a3cgitstbt S p d and

Pato10gkt A usa to atrbsh a good

relationship with ha

Wiui Aspages syadrome U to a & fbr t h e advice She ub tw

their advice aid m dohg so rfnmuthr iatcllieea# and compdm. Spcech and Lauguap

Pathoiogist A explab how she values h a ciieatr by asking fw th& hdp:

Ineori~ttMng~~byio&isfogufhrnrtok$m So eI .'llsqyIhavsa~dtyin
smearea A n d l t e i W e m ~ s m a t t i h c y a t e m Andlmakesute llwrtIteZI them. A lot

of it is fikr the Gentle TacitingA p p d

Sb, nu matter hmrnoyiiig thqt arn be, I am coltSIont&teliing k m how anart

t k y me, and how d d l e k i r ski& m. Andl'ii m thnn to he@ me out 'Hq, Ik

go?u U s ~ c u 2 ' . mcloyarlbik?'

Social interactions wbich have seenrd to be succcsrful for individuais with Asperger's
have had muhial respect and a vaIuing ofeach other's cornpetence as one ofthe components of

the interaction Speech and Lan-e

Pathologist A dates the story of when David met Temple

Grandin, a univasity professor with Asperlrer's syndrome,who lectucers oa autisrn, as an

example of a successfid social interaction. She said tbat Temple looked at his drawngs and then
they started chatting and comparing when they had fint talked. Soon they were out of the

meeting room together, photocopying David's art work 1told Speech and Language Pathologist
A about Martin and David's first meeting,which had also seemed to be very aiccessfil, with both

Martin and D a v i d doing voice imitations ofmovie characten and Iaughing. She and 1discussed
why these two particular socid interactions were successful in our interview:

Being rcgaded as a competent humanking, who can makt a contribution vety

important to Aduh A H e taiked abut kmg tdan out ofoae schooi, without an arplanatioq by
his mother. H e a d 1had the foiiowiq conversation about t h incident:

A:
1 :

IdpprYbw&~&StuneiiietqI;aiitdittome.

So.yaidarYlik~donctoyoer.

A:

I&n'tlikthm~~dbncforinc.Lik~youmegoingtorlosomelhingfoorme

....yoic know,
it, t k n mart lik&

shouIC1 tell me why beccruse if'have got a logical rearonfor doing l ' r ngoing to accept it She d l eventuaily taiked that fhrotrgh You

Anow whal thut diri?

Thrrl taokyears.

I:
A:
1 :

But, it a h mm& like a respect thhg YOU wrmf people tu tteat p u wth reqect.
Yeah,
niotyori me entitIed to kiow why fhey me muking this decision thai is imiving

you und is cruciaiforpur lve.

A:

Yes.

It seemed to me during the i n t e ~ e w that Adult A was expressing his desire to be treated with

respect as a competent human beins. Adult A mentioned what he had accomplished for Teacher

123

B . suchas cleaaingbUcuudrnowinghUgny w h e n h e w a s ~ a o u t t h e n p O r t 8 n ~ ~ 0 f
Teacher B in hh B . This #ams to be another way ofta&& about d

g to be thought of=

competent.

in addition Ad& A WLcd about the vduc of 6dd trips inhis interview, stating that t h y
were oppottunities for onding anci that they put everyone on common ground. 1asked him what he liked about fidd trips and he nplied:

Inoslies,yollg~lawayfom i t d L Y~(ptuchrmre tobopdabit which heIpedbacA

atschod Ymgortokiowrhcm Y o u p t o k u m r h c r ~ Yar&rstond& .

other, on a ceriorir 1-1.

B ~ C Q Iyou C Sare ~ working t-theer.

andyoujtut have fo gef

almg A n d y o y ~ way. a Yocrjhd a common g r a d It hegs, it ahwys helpr It

newr laaiP to how wmmon g r d

1interpreted >mmon groued to mean a sense of cquality, a place to m a t each other and work

together. 1also intapreted Adult A as myhg that he wants to be treated with respect as a

competeat human beiag who i s capable of making a contribution. Indeed, at one point in his
i n t e ~ e wAdult , A tolLs about helping out inthe

Program. @g:

It 'k been importcmtfor me,d it 3 aciuuiij been wyfiIfiI1mgfor me thal I w t go a d

mak a d!erence somewheto. And I need fo m &

a e r e n c e . WhereverI go. whutwer

I do, I need to mae a dwerence. #I &n 'tfeel that I um make a dgerence i~

something thert there ir aimos no point in me &ng il.

Part of building a relationship with people with Asperger's syndrome is respectkg theu autism as part of who they are. Parent B believes that her daughter's psychologicai problems

124

could have been d u c c d ifshe had

givcn

d e r diagnosh and h a pannts and h a

Since she did iiot &e
a diagnosis

teachers had uidetjfood how uitirm & i e d

hgkhviow.

ofAspaga's syndrome udil Grade 7, J i m bas suarcd through yein of uarralUtic qwctations.
Her mother explains how ioceptipg autism as part of Janc's penondity wouid have cnhanced Jane's sense ofself,

~~karprhcd64yoAdwtYlimiypasw,errnkpuhcddkrsrrf~~:ept~
k e n e r d So lfigun, W's t kkey, is to manitoin agwdse~-concep& Lertmg the

personbwnu~yuheyareotrtrotrtrstrk IhiststhewUicycao. nisyacinlivoal~ekt

is worthwhiila.

But tkgv &n 'th w ro k mmwtistic, &ecawe rh.y 'rc newr gofng to be

notwutidc,
1clarified her comments a d she added to ha arpianatio11=

I:

Sb vuhriiig h i ? o~n~sm asputt o f who t&y are?

PB:

W's n'ght, Thrrt 's what 1w d h e &ne. I W wouldhave been the most

hporkmf thin8 1hi& t k tan e d j cltanaas would hriw helped

to me, 'Ym lwiw rhrsfour-month-okki chilci.

Ifsumeone M smd

She 's going ro have these problems. Work

atocardit G e t k ~ , ' I c m H h a w & n e r h o t .D o y a r b ? AdIihmkJne[ric]

warld hrrw been a mch hqapier child

As long QS the s c h d and al2 the oiher places.

thar she inieracfedwith, radit. Or iflw u H hrrve expi'ned ii to t h .

When 1asked Adult A what advice he would give to adolescents with Asperger's
syndrome, he made a strong statement about acctpting autism as part ofwho they are:

Don't &v.DOR't deny thefact that you /mve a disabiityotrtr For tao long l med to deny if
because I was Maid o f whut it meant. Don 't deny it, because when you deny it, then YOU

have to ab some a d m g to m a k Ive plcpcuoble fm h t h o f usr'

Teacher B accepts the message of rrspectiDgautbm as pen of the p e f s ~ n a l i t y of people with

Asperger's or autism, and he as0 accepts the resp0llsl.b.i o f d g as th& adwcate. H e gives

his reacfions to the speaker's c o m m m t s endomhg a culture of wtkm:

Iguesskt'sthekey. WePc'nnotgorigtomokrhemin!othe~ofindnti~Lsrhotwe
might wish t h we couU mou rhom nita I fhink thcd we 'va got to tuke wiuit we 'w got

cmd rea& accentuate t kpds~~tfve ski&

&at tky have. And @y and bridge Society 'k

undorslcblding o f thispopllhtion d j W t the general acceptom~ o f these young men and

womenfor who ihey are.
Being in relationsips with people who demonstrate respect for the autistic component oftheir

personality and who act as advomtes for thern, would help those with Asperger's feel accepted

for who they are. Such nlationships could be a d e base for social growth.

Once a safe, trusting nlationship has been established with an adolescent with Asperger's

126

syndrome that rdasionsip can bc used as a pircs to observesimerprct, pcactice, and get kdback

for social intt~~~tl*om. S i socid intemction~ are a<mmcty difFicult tor individuds with
Asperger's to undentand, t h y wed the support ofa mcntor to interprtt the socid wodd. TIiU
mentor has to bc s o w o a t thay f d Ma awugh with to trust in thh, th& mort w h d l e ma

It also has to bc someone who may acwmpeny them into whatcver d contact thy fiad
themselves in, so that the mentor may obsave what happcas and be able to give support, feedback and S
U ~ ~ ~ O L L S .

Parents may act as tcir chdrrnssmentors i n mmy soQal situatious. Parent B h

herseifinterprehgthe wodd to h a daughta because that is what her daughta samed to nad. In our interview, 1statd that i t was as though h a daughterwas using h a as a sacid security
blanka. Parent B 8gmd:

Thor 's rigk And ako I interpreted kt zo he w

d f i n people m l i i corne ovv she

would sit near me. For exantpfe' we would k a t the &mer bbie and she would a d me
wiiat this one wus m g , w h they meunt by whut Ursy were sqying. It w m uCwqys w k t

they meant by wlwd iey were s c r y r ' n g Ami were ihey &king about her? And so 1was

ahuays tabirgJme [sic] out whcn we hudcornp4ny in or&? to by to exphin to hw, by to

reczrsire her tha everyihng was okry. and thut people weren 't Icnghing ut her, and thpi
this wasjiat the wty thoi people mteracted
Speech and Language Pathologist A reports that David's mother bas been a mentor for him for
moa of his We. However, now she is finding that he does not want her to be a part of his social

interactions as an adolescent, and she is unable to help him in many social situations.

David netds to accept a replacement for his mother as his social mentor. Speech and

127

Language Pathologh A h able to givt David some sociai interactionsuggestions, but she Carnot enter many socirl interaction dution~ with him, so she is limited i n the support she can gin.

Ideallys Speech an Langua,gePathologkt A would Ice to oawt social n t d o a r aad take

note of the sLillr tbat David lacks. Then she d

d have a basis for tcaching skiiis. Sinct she

cannot do th& she attenrpts to hdp David i n social interactions by making s u ~ e s t i o about ~ how

he codd enter a d Jihution and by revewingincidentsthat shc hiows about with bim.

Unfortunatdy. d t s sDavid accepts someone who couid act as a social mentor into is

interactions wirh hU peaq he WU continue to h d himselfin Ullfortwate duaions, like the

I'brary handscaiid incident

A mentor who couid enter social situations with an adolescent with APpaeer's wodd be

able make suggestions to trise the situation .ad&O would have o b d which i n t d o n slOLls
to t
h

Fmm a teacher's point of view, Tacher B har found camping arpaiences to be vay

beneficial for exactly this teason. H e can obsave bis -dents with Asperger's i n nahirril socid
interaction situations and plan teaching strateges for them. He answered my interview question

about the most positive social interaction acpaience by saying:

Im e s s the mmtpos~*tnte social interaction expeionce hm ahvays been the camping experiences, because in thme siiuatiionryosr 're with thcm individiuaLsfor twenly-fbur
h m a day. So you get to test out some o f the idem thel you 've been bantering a t d

ihrwghout the yem. Andyou get to cteae socicf situatio~~, where p am sSI bac&and
be an observer,oryou can be an active p m t c i p t , mrdyoy ccm sort o f k@y some

gr~mciivork for fitare phning

greutest.

$0,

afm cnpom u teacher'sperqective thut is the

128

Since parents are able to accompaay teir cbildrenino sociai situations tor many years,

<heymay-ddop&maiit~rmaidiuPircotBbdacrWParent B have f

P-Ad

d thanseives ~&pthgtheg cdren ptiot to entering saaalsituations. By

scrpting they m a n telhg tbeir childm conaetc deciils about the social acthity, such as Who is
going to be tbm, how long it i s gohg to be, w&i Y gohg to happas wbat the parents p h to
do, and wbat aitesnatives the childrca may chose whe tlay are there. Parent A explains how she

and her husbaad p n p m Main for sboppw d o m :

T M g to giw hiin m a r to k@ Mm where k h e d he@ He reqonds to CIIjjlg And

sort of s e -

the =ne.

B%eny4u

're&i&gMhtitn [sic] into a store you med to

prepmahim f o r w i y l i i s p i n g l o ~ rmdwhaMsDodnee&todormdwiwithe

me& to accomplish He dOdS reqwnei 10 dhQt

Parent B has leamed what to anticipate tiom h a daughter fiom years of obmtion, so she helps
prepare her for social interactions by &ing ber altemative behaviours to chose f h m that wl

avoid problems. Parent B ghm the foilowing #ample ofscriptiag:

We hma for emmpIe, i f tkre am lirte chiI&en here,

Jm>e [sic] mighr bejeaI0trs o f

the IittIe chiidken. And sho mi@ mn sciy methhg &fore she ieaves, p u knm, S hate linle chiI&en Id;on't want io db this wirh them. ' Or whaieverThen we um . yto her, "Well. i f p u &n 'twant tu do that, why don 'tyou watch

T.Y.? ' or 'Doyov want to 14ke a movie mer to the people 's hotue? ' w 'Wmrldyouiike
tu get a movie thor mqbe lhis kid in thefami& might Iike to waich wtth p u ? '

She &es Nintendo nnv. Ym how, 'rfy011wcmi to get away,y4u ccm aiways go
into yuut room d do Ninter~do. '

129 ~whorwur~to& snotbmhrrin , Inrn'sarro/rhsrhings.

~askedP~BW~J~l~ftcdbacLrftai&hdonsndPua~tBorpiiiincdW
Janeofim~t~~tilL~ec~mrbardl.m<hat~knaainnya Howevu, eain. if
Jant is diohubed by =methhg that happead, pdMilnrly 8she thmLs tbat somcone did nat iike

her, her parents initta the fadback

Teacha A wwld advise pmats to droQa i n t d o n s W s at home and to create a

fiarnework for th& chiidtenwith Asperger's syndrometo reiy on in social s i t u a t i o n s . She

explains:

I would teil t k m to urr te4chingsodai &Ils a t home, to do llrat asmirah m they c<rn
fomIhodiRCI/ICAi&mslitlk,soikerwkntheymehasi~-on, theyhaqtto
f a l i k k a r N d ~ # n g t o h ~ & W h m a r a ~ n ~ ~ k A Btrrlntwnitis i&h.

afonn o f suiphrg. nKy havc to luivc afiame o f reference fiom which to ?nuke
comet~4non. GW them a iisr, 'Youcoutd tolkabout hi$.' 'You cml talkabout that '
Let them kww wtwd the options are i i r r e d o f w arnniiig that they me going to do
what ai2 k f & da eaacrsa they a

h 't krow what ail ki& & .

One-to-one reiationships with school persorne1 aiso o&r the opportunity to practice
social interaction skib with a usted mentor. Teacher Assistant A values the opportunity for

discussion of social issues that a d e relationship gives adolescents with Asperger's. She would
advise, as a sarting point for discussions, "Bringthem evegwhere and talk about it It givosyou
contex& " Teacher Assistant A found that she natudy spent a great deal of time talking about

feelings in the discussions she had with David, Frank. and Adolescent 4 and she said,referring to

Frank, ' 7 think it was importmrtfor him to how whatfeelings,you had to s p e c i b , it had to be

130
veqy dem. " Speech rad aaguage PathoIogisA tries to niecdythe drrticits she secs in the social

interactions of those wah Aspaeds in her one-twne hnguapthtrqy d o m with t&m. She
tries to irnprovt thar use ofMing hnguage, use of ceciprocal cornmation strat@s,

understaridiag of roQal interadions by:

IbIs4nrrd&ubalbtofpur~ You~,rrpltiqgbonk A d m t o
rephpaw whUf riay ca syingmfieiisig W .

Imight ask them to comment on whzt I 'vejustsaid Sb I

tp?so f

tu 0uiUi.nrec@ttxal

eanvar&on

d~ul~~~)~~~~~crriton,

Tl to rode-phy rke
Teacher Ashant A uses mle-pbying and tryhg to p m t the point of view ofan adolescent girl

to give Adolesant A some strategiesto use wai he i s taiking to a gi. She tries to give hmi an
entry to convtrsationby having him think about:

Whoz 's ~ropn'tzte?

l+%t do p u talk fo someone about?

She might be mterested m Iliris.

What 's k ive lik?

FWtcibyoickrowuWher?
Wht& p u

Iciinkyamg Irrries migiht be doing?

Teacher A sees h a relationship with Frank as an opportunity for him to practice nlating to an

adult fernale. She says, 'Tmthe on& one he can practice somc o f his moIdfema1e things with.
And it 's safe to practice with me. " Thus, d e relationships offer the oppominity for adolescents
with Asperger's to begin to practice rnany o f the components of social interactions.

Asaf, ~rdatioajhipwitha~d.miltampmvidethtstni~tbat~lac~in

the L i f e of someone with A s p r g d s Syiidr0a.w. It ans thit individuals with Aspages

syndrome have a gcat deal of di5adty with o r p h h g the o

According to Fnth (1989) rnd H i @

dst~chm oftbeir ns.

(1995) thy do not ofganize a d discard information

accoring to how devant it is fbrundastaadiog. hon no^ Rogers, and Permlligton (1991) found
that both th& subjects with HighFunctioning AuOisn and th& subjeds with Asperger's

syndrome w a e ddcient cornpared to controis at accibive fundon tasks, whkh measUrcd

problem sohring abity, such as the Wisconsin Card Sortirig Test and the Tower of Hanoi The
inabity to solve simple, everyday problans beawc of an i n a b ' i to undastand which details of
the problem are relevant to its solution would hdad be debilitating.

A trusteci aciuft in their lives,

who could act as an exCCutive to orgmh the sucture of ddy, w d y , and monthly eveats,
would indeed be a welcome relief for adolescents with Asperger's syndrome. It appears that Teacher B acts as an a c d e in Adult A's Me, helping him to place an
organimng structure around what wouid otherwise be a chaos of d d s . Teachex Assistant A

recognkes the executive role that Teacher B play in Muit A's fe. saying that Teacha B is a
'ksorce o f or&r cadsanity" for Aduit A. Teacher Assistant A also recognizes that i fpeople

with Asperger's syndrome are unable to find caring, tnistwotthy adults to help them structure
their livw. they d l look for other sources of structure. For, ample, she believes that the very

ordered religion that Frank has chosen provides the organizing structure that he needs in his life
now that he has graduateci tiom the Autism Program:

And the religion thar he chose is a very ordered religion. And he h

s he won 5 k able

syndrome, they cannot work, sociab, or lerrn &out Jocirl interactiorn. H e eliews that the
ideal work situationfor sorneone with Asperger's syndrome is one i n which he or she acts as an
apprentice. In tbis way stnrcture is pmvided i n the work phce and the individuai with Asperger's
can conceutrate on the d&s of bis or h a job, without wo-g

about the o v d direCCionof

the work project. Teacha B u c p k

I red& see h m msort o f idool qprentice people. 2 7 1 9 have fhrri &sire to lomn and
the &ire to sort o ffoollow directio~
they cion 'thaw is the whemvtewrthul to look u t

the big p i c m d s e e h m the d p i e c e s f i t togeber to nide the whde or to deal with

the unkwnun or ~ ~ n u b ithut c s mqy crop q.

Teacher B also believes that unies someone ads as a recreation director to organize the
social outings of individuals with Asperger's syndrome, that they wiii sit at home, unable or
unwilliag to set up oppottunities to m e t with other peaple. Teacher B made the following
statements about stnicturing social oppoctunities for individuais with Aspergefs syndrome in his

interview:

I think the one thing thor I have lemned. over the years, is that stmctwe is essentid.
And ifyou think that asocial development is going to d e in impromptu, off-the-cuff

wiii not take place without conmete s1911s king taught in struaurrd settings. Teacher B

promotes the use of discussion groups as stnictured settbgs for adolescents with Asperger's syndrome to leam sochi intaadion skilis:

F m a teaching perspective, rescnuces fike &scmtDon cides mo m. llrey 'nnot

going io Ieam &mgh the notntaI c k e & of obsenatiuon mddqy-day interactions,

beunse mony of them opt out. 2 % opt ~ oui because thai 's eariestfor themeor rhey
don 't wmt to get ~ ( g hup t in the c o ~ o o f nsoiciai interactio~ts, or many afthem op1
art be-

of previotcs ernb4ssmentst iemngeor bad mernories. There me stars that

have to be recqpzed and rnen&d over time.

Aduh A comments on the value of discussion groups in his interview, stating that he fbds t h e m to

134

very usehl onMo&y mom,ingsY wtiich 1htapnted as meanhg that t h y are -y

naded

afker a weekend of copiag with &e roaJ w d d on his own

Thachastokaf4nilaL A n d l t h h t k g r ~ ~ r i m t m r u C w q y s0 a h ~~,
muhile.

WWH l w p r ta^ Queens Colecgke [* va M g n r p di'hs on M * TaillrsdaboutowweeAend: A n d I & w t ' t k i a u ~ ~ ~ ~ d d n g r h I r m m c h h cmy are,

more.

IdahkrhatMonhy~skttorbe~ywr'ra/usrgernig&ck~ It'sanicewy
to get setied in.

Teacher Assistant A coaain with Teacher B rnd Muk By anphiuimig the importanu of
stnictured actMties for J o a d interaction skiiis laming.

S b advises o g :

Swchrred thin,,stnrchned ocfiVities Activitiiar wkre there was a mal1group- Up to

f i e &&. Srnethere diremg thingr, byng tu keep ihemf a u e d on whtever ir

war tky werejoclls~hg on, ijthey needied he@cirrecting collver~~ll~oian But most of al1 a

plmedacfvty, aplLmned d s c t ~ ~ ' o ~ t ,

Adolescents w i t h Asperger's syndrome nad help in organizing the overaii stnicture of
their lives in tams ofwork, recreation, and l&g

social interaction skills. A tmsted adult, who

could a a as a life organuiog executive would p t l y enhance the quality of theu lives by
providing the safety and securit.of a snuc~ureci environment. It appears that relationships with c&ng adults can provide the requirements for survival that those with Asperger's requin:
positive self-perception, interpretation of the social world, and a structure for organizllrg their
lives. Lovhg, knowledgeable care-takers are key to successttl treatment plans for adolescents

with Asperger's syndrome.

A second auQiI compon-

of~ccessfirl aieatm-

pians for rdolescmts with m e r ' s

syndrome is to use theV saDgths up u t ofthe trcatmcatplans. There are two areas of strtllgth
that fan be used to achmtage in treatment p h for a
d o wah ~ Asperger's ~ syndrome. The

abity that those with Asperger's syndrome have to rosis on datas and to leam by o b d o n

can be used to a d e

in aeatment plans that involve social interactions slalls and miplopent

skiiis. Secondly, thar areas of interest and i n some cases the pefscverationscan be used to
provide opportunities for social interaction and anployment, and to give an o v d organipag
structure for th&

lives.

One consistent stmgth that people witb Asperger's syndrome display is their ability to

pay attention to visuai detailS. This strength could be used in Joaa interaction treatment plans by

teaching the adolescents with Asperger's w b t v i r a i d nies to look for as an indication of falings

or timing in a conversation For arample, rolling eyes may indicate disbeiief and yawnhg may be
a sign or boredom and a aie to end the conversation. Tacher Assirtant A believes that Adult A

is aiready skilled at picking up visual cues as to what pleases a person. She th&
people ta know how to act:

he studies

H e really changes W hcd#erentpoopfe. H e ahuays ac& about the smne with me. As
soon as he geb to kiow aperson he '11do things topiewatching iheir reacfiom.

H e 's ahvuys watching,

136

in his interview, Addt A talked about how he does use o b m t i o n to leam about sociai interactions:

You s e kw otkrpeopk inieruct, andpu h m a b t by a e m g h otkrpeople

htemct Ithinkthrit'sgmetd& h a w p l "
J Y U n e of the r

o m clnywqy.

P o p (sce 0 t h

peopIe nitemcti And someiimsry4unsmk m i e Yovpi& iq, on spme negrilivc

thrrtpeople & . lkn~hcnyarpickup somep*thw. And1gwsr)r~ufirff hrrw to rue

jadgemenli P o u weeduut Udngs Pou l e m & )uot&h,~lg. Rndmmetimesyau m n feorrn

b y r d w i n the hrqqerpb e c s l r e p see &me~ncmci&ones, a t o l &e home.
Adult A has leanvd fkom his obsc~atiom that people an be deceptive.

H e says: 'Yarorcise

more m i t i d t h i n A i n g I cMIenge. I mempsometinres, peopIe q p p to ~k thls and then Ihq, ain Y. Sometimesyou get bumeci "
Adolesce~t A bas a b l e ~ ~to td use his observation skills ta lem about people and social

interactions. H e gave me the strategy that he haci sbared with 1Mariin for hding a girlfnend.

I bam'dly foH hi&

it 's k h i o f kefishing It 's apattern

It 's a littk proces they & in

or&r/Iik rhdjhhiqg rhmg rloes ikotjkh, fcrc~non, adpre~~tltotioa So L i & sndyng

the hobits and sort of t kperson Than rhcre 's Ibtioon tand then there 'spresentcrtron.
Adolescent A was t e b g Martin that you had to study the habits ofgirls to know how to approach thmi. and then you bad to be in the right location, and present yourself to them in an
acceptable manner.

Using inteilect and attention to visual details could &O be usenil in l d n g the tasks of a
work sight. Leanhg the required skills by caretiii observation, within the structure provided by

an apprentice-like role at a work sight, would hcrease the chances of occupational success for an

individual with Asperger's-

As bas k e n stated epa in tbio document, many iadMduals wah ~spaeer'f bave ui dl

wasumiag m a of inenst or pasevartioa This interest can be d to advmtage to provide a

route to imrohremcnt withth world for those with Aspascfassyndrome. Some o f Uidividuals
with Asperger's intbis shidy haw begun to CO-

to the worM through their perseverations.

Davidhsranailco~inta~rninart. Hkdra~avebcguntogivehimanentry
into social situations. For wmpleaDavid showed Temple raudin his sketch book as a way of

introducing bimsdfto ha. David's arrisiic skl U an importent composent ofwho he i s . It gives

him a positm sense of self. an ocnipation for his the, and a way ofbeing known. Spceeh and
Language Pathologk A told me how David bas used art ttrroughout bis Iik to impmve hU sdf-

perception:

H e told me rhUr he WWM &m a1l the linie when he wcrr pmger, because he war g d at
it. He soidpeopie thought he was *id
feeI *id

And he soid w k n he warld&aw, he wmlaroi

It wurp somethg ha was gm at

Perhaps in t h e David cwld d d o p Socid relationships through bis interest in art, or use art i n an employment setting. Teacher Assistant A suggests how David's interest in art cuuld be used in

personal interaction matment plans for David:

A b q s with mmething they love to do, like art. Send David [sic]to Bcmff to the Shool

of A n with someone. Stmt slow&with maybr sMeone who has been there a d have him
talk to that person and then graduai&, eventually, he would be able to go them

Introlhrce him slow& thrmgh someone he mightfeel cornfortable with to other people

who do clrt b the dry. Go w*thIheir. inlera%

AithoughIhvidharrnueaofintmrt~daEil~~maygNzhb~to~~d
occupational Mary he sti bas a grave d&cit inudemtandingsocial h t d o u s . His
antagonistic mamer CM crPly -e
sociai and work dationstiips. ONOlg the wroag message

or not compnhening an intendeci messag~ d d end his participationi n &events or

employment opportunities.

H e ne&

an duit Who uadastiads bim and hb d s m , a d W h o

would be wiiiing to Mas aa admate and an inttlpreter, to accompany him to art related soQal

activfties and art relatecl ducation and unplopent sights. David's acccptance of such a csn person i s dubious, but bis cntry into soaal interactions without an advocate and an interpreter bas
littie chance of success. The possibility i s high thrit he wiiI k IcR drawing aione at home.

Jane's pasmratminterest i n and talent for mdng has provided h a with some of the
same ben&

as art has for David She has rramd acclaim and recognition for h a athletic

ability. It i s part ofwho she is and it helps to structure h a worid. There is a sequence to trainmg
schedules and m a t s that gives organization to h a days and weeks, and provides events on her

calendar. However, her parents have discovcred that it S ucemely important that they be a part

of her athletic events. They have found ~emselves inttrprcting autism and theu daughter to coaches and other parents* niey have bad to anticipate their daughter's reactions to losing a race
or being criticized by a coach, aud to plan coping strategies for her. A component o f Jane's
success on the track is h a parents' presence as interpeten and advocates. Ifthey uui r a i t

more people in Jane's ruanig world, who understand her autism, h a chances of continued
success wiU multiply.

Parent B has corne to the coaclusion that advocacy for autism i s one of the best ways of

1 :

If it 'sgohg to & ttny sort of a new ~tuation, to p r e p e Jme [sic] a d ro prepme

The people who are u L Oh, yes. we hmre t o p r e p e the people. becatlse they

the people.

PB:

wiil s4y the &me&st rhings a d thcy m*ll rlo the dame&

things;

Some individuals with Asperger's syndrome or autism have begun to use thar interest i n

and knowledge about autism as a way of organizing their lives. Temple Grandin is a good
example of such a person She travels around the wodd g f i g lectures about the topic she knows
best: autism and how it afEects her. Het lecture cimiit gives her life structure and het interest i n

autism @ v a her an occupation and social contact. Teacher B interprets autism as the foundation

of security in her life:

140

"She'srnridea~er4~1ufbemgw~skfS~l ~~ ~ ftn og h .s r r h u i ' s i h e greatestfoundirn'on o f

a t e a o f ~ '
Acting as an sdvocatefor others with mtilua sad Aspaeds syndrome may Plso help Ad& A
s e c t l l t C t l l t t 'Iki y t au&&,

Icia &&obout

cltltism.

andl kunu ny

struchwhisfeandgivehima~of~worth, Hebarspokenasapaue~atrinaaitism
coderence aad he mentions wanhg to nt&

a cif@wmwith his te. M u i t A aedits

discoverbg bis intaest and aptitude Tw ~ C C O U I Ias ~~ a turning point in his We, he calls i t : f l . g

my niche. Both d

g as an advocote for people wih Asperger's syndrome and autism and

studying for a caner in accouatmg allow M u l t A to use his arcas otbiowkdge and interest to find structure and cornpetence m the world. As M u i t A rays:

I f d q y niche. Andlplmr to pwsue

where 1a

and. . basid& keep &hg the rhings

..

n naatc a merence. AndIfieI t h ' s where eve~bodj,, Nen uperson who has
O need tu m &

qwciail nee& p u hm, ihcy aII haw

a difierence,somewhere. And

0asrasrcal&, rhm's ... the bottom iine, right tkre.

141

CONClLUSION

Belicving that one can make a clifkacc a d tint one i ri pason ofworth 9 a mark of

psychologicai herlth. M u l t Ai s strhhg to npd a p k fw b s c l f i n the wodd that @es 1Dm a

sense ofcompdcncn Parents, t-hcrs, cliniamS, and itadS of tdolescents with Aspag~*s

syndrome wodd k e to hdp &un to acbicve a p b ofworth in the worid. The route to psychologicai health for adolescents with Asperger's imrolves Ming a way to comect with the
world as people of worth. The participants i n tbis study have indicatedthat the key components

of succes for such a conneaion arc: rdationsbips, structure, and area of interest.

Relationships tbat provide s a f i and seauty can be used as a basis for enhancing selfperception, intcrprcting the social world, and pmvidiag a ~~g
structure. People who

are willing to act as Ehimanists,kshgth& rriltionships with adolescentswith Asperger's on

respea unconditional acccptance, and afbmation, are the key to niccessnil treatmeat plans for adolescents with Asperger's syndrome. Caragivers who have established such relationships and
who undentand Asperger's syndromec m act as interpretive bridges berween adolescentsw i t h

Asperger's and the g e n d population In one-twne s i t u a t i o n sthe tnisted care-giver may

explain social interactions and mode1 components ofsocial interactions, such as eatry slciiis. reciprocal conversation, and ushg visuai aies to interpret feei'mgs and thoughts. In social
situations the trusted cuegiver may act as a mentor, interpreting social interactions as they occur
and encoumgbg appropriate social behavbur. A mentor rnay script social eacounters prior to
theu occunence and debrief afterwards. A committed are-giver may also act as an advocate,

interpreting the behavioun of adolescents with Asperger's to the people they wiil niaiunter in
each social situation. Finally. a tmsted, understanding are-taker may act as an executive,

142

providlig oqanidon and structure in tams ofrecreation, occupation, and sochl interaction.

ProViding stnichin appean to be a kcy component to s u d treatment pladolescents with Aqergefs synhme. Because e x &
hction, pmblem soi*

for
abiilities are

hampered by an inaiiity to organize and discard i n k d o n fbr meaning, individu& with

Asperger's are at ridr ofbog Iost in a chaos ofdetailS. They need an outside agctlcy to provide
structure for thai lives- Planneci opporhrnities for d

o n and sochi interaction are requind

plan .

so that individuah with Aspcrller's are not l a alone and at rUL Tor depfession. A sp&c

for practicing d iotdon

&Ils is rrquirrd, with a experienced, understanding tacher to

o r g e sequential, onato-one lesson plans or to niatate group discussions. An apprenticelike occupation, where sowone else provides the long-tam piamhg and structure for the work place

seems to be ideal,

The area ofinterest or the perseveration of an adolescent with Asperger's syndrome may
be used as a starhg point to a social interaction treatinmt pian, and mntually to the o v d goai
offindimg a place ofbelonging in the worid. The uea ofinterest may be used to as an opportuaity to corne imo social contact with otha people. For acample, an individual w i t h Asperger's, with the support of a mentor and advocate, may join a club or find an acquaintance
with a similar interest. This would be an oppomuiity to begin to leam social interaction skills.

Eventuaiiy the ana of intetest may become a way of placing structure on the world, an occupation, and a way to make o dflerence.

The crucial composent to any treatment plan for adolescents with Asperger's syndrome
seems to be loving, understanding peaple. A network of people who can and will act as menton.
social interpreten, We-executives,and advocates is required. Such a network could bridge the

143

barrier and b @

EbnhanCmgacass to the worM lor adolescents with Asperger's synhme.

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Szatrd, P . ,Bartoluai, G.. & Brtmtler, R (1989). Aspagds syndrome and autisrn:

Cornparison ofeady history and outcorne.

709-720.

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(1989). Asperger's syndrome: A mriew ofciinicai

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P . .Bnnmer, R,& Nagy, J.

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Saitman P . ,T

autim Neurocogdthe aspects. IplimJof dieof -C

psvchiemr.130-136.
Tantam, D. (1991). Asperger syndrome in adulthood. In U .Frith (Ed.),
Aswrper @p. 147-183). Cambridge,Engand: Cambridge Univenity Press.

Tantam, D. (1992). Charactentiag the fundamental social handicap in autism.

5 5,8309 1.

Tantam, D., Hohes, D., & Cordess, C. (1993). Nonvabal expression in autism of
Asperger type. Zpuniai o

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LL

1 4

Wolff. S. & McGuire, R (1995). Schizoid petsowthy Ui girls: A followup study-Wmt

are the linl<o with Asperger's syndrome?
36. 793-

Asperger syndrome was diagnoseci mcases showbg a of the foliowing six symptotns:
1. S t v a c impahnent i n nciproealsocial interaction, showhg in (a) inabity to intaact or play recprocdy with age-pan, (b) a ack c C u o ddesm t o be i n the oompany of age-pets, (c ) a lack ofa p p W o n ofsocial CU* naili.,qin odd, rocially or unotiody ioipgropriate behaviow, usuaiiy thought to d e c t "CO~&CSS~,Ustif16nessn, Uemoti~nal bIuntnesshnmaanity", "extreme egacenicity" or u ( i i n u i t d piay ~ ~ a&g" (aich as i n the movies om the eady
period).

ciraimrcribed interest in a subject, such as wteorology, astronomy or G r & history. This interest m ~ change y i n content o v a the years, but its fundamental style r e m a h in that it goes to extrmes, exciudes rnost otha 8CtiVities and adhered to in a npetitive way and rdies on rote memory rather than m d g and connectioa
2. An a-absotbthg,

3. A stenotyped way oftrying in imroduce and impose routines or the particuiar haest in ail or ahost all aspects or ordinary M e .
4. Speech and lillypicyle problems showbg as (a) delayecl language devdopw~t as cornparecl with eqected &en the chd's sociai ianguage background, (b) supaficiaiiy perfct

expressive laquage with a strong tendto becorne fomd and pedamic and usuaiiy with a fia& staccato-like prosody, and (c ) d d or moderate impairment oflanguage comprehensionw i t h concrete mierpretations of spoken language against a background of much better expressive language skills
5. Non-verbal comrrmtljication problems, with linnted or clumsy gestwes and Liale or inappropriate fcial expression.
6. Motor c ~ u m s ~ w was s not a prerequisite for diagnosis of Asperger syndrome i na centre (Gillberg, 1988). However, as it turned out, almost aii of previous publication from the 23 children in that study were found to Juffer fkom overali clumsiness on neurodwelopmental examination. W e therefore decided to include it in our diagnostic definition of Aspergei syndrome.

No requirements were imposed regardhg the child's intellectuai level.

1. s o w

Two of? N o close firiends

Ami& o h r s No intaest in mrlin~.-ie(i6 A loner

2 . Impairrd SociaL InteractioaOne of Appmaches orhas ody O bave own n#ds met A clumsy sacialapproach Ont-sided ttspotlses to pecn Difiicuity Senmg fkbgs ofothers
Detachcd &om fekgs ofothen

3 . Impaircd Nonvabal CommuRicatio~~:

Che of

Limiteci fciai expression U n a b k to rcad emotion h m fhiai expression of chd Unable to give message with eyes Does not look at others Does not use han& to express o n & Gestures are large and clumsy Cornes too close to others
4. Odd Speech:

Two oE Abnormalities in infiection Talks too much Taiks too littie Lack of cohesion to conversation Idiosyn~c use of words Repaitive patterns of speech
5. Does Not Meet DSM-III Criteria for:

Autistic disorder

1. A lack of my climdy ripifiant gmed dday i n languageor c o g x i h development. words s b d d have dtvdopal by two yan ofqe or carlia and Diagnosis r e t p h thrit t h a t c o d ~ p ~ b e u s e d b y t h n t y e ~ o f a g e o r e a r i iSdf-hcpdrills.idsptive a. behaviour and d o * ibout the environment d e the 6rst t h e yam shdd be at a 1 4 C O L S with n o d inteilcctuai deveiopment. However, motor destones may be somewhat ddayed and motor d d w is usuaI (although not a necessiiry f i a a u e ) ) . IsoIated special MIS, ofken related to abnomai prrocaipations, are cornmon, but are not nqpircd for diagnosis.

2 . Q w b t h impairmetlf~ i n recipmcal social interaction (criteria as fbr autiJm). Diagnosis rquires demomtmble abnomaiities inat ltast thra out ofthe foilowing five areas: (a) Mure adequateiy to use cye+tolcye gaze, ficial txgression, body posture and gesture to reguiatt dintaactorq @) filure to d d o p C m a manner appropriate to mental age, and despite ample oppotturilties) peer relationsbips that nro1.ea mutuai rhariiig ofinterest, activities and emotions; (c) &y seeking and usuigother people f9r comfort and afEectionat times of stress or disaess and/or o&rine comfrt d aBMon to 0th- when they are showing distress or Mhappiuess; (d) lack ofshared enjoymait int a m of&arious ~ pleasure in 0 t h people's happhess andor a spontaneouo Seekjllg to &are their own enjoyment throughjoint involvement with others; (e) a lack of socio-emotiod reciprocity as shown by an impaind or deviant response to other pemple's emotions; anlack of modulation of behaviour accordhg to sociai context, andlor weaL integration of sociai, emotiod and communicative behaviours.
3. Restxicte, repetitive, and stereotyped patterns of behaviour, interest and activities (Criteria as for autism; however it would be leor usuai for these to include either motot mannerisms or preoccupations with partsbjccts or non-fnctiod elements of play matenals). Diagnosis requires demonstrable abnorrnaiities in at least two out ofthe foliowing six areas: (a) aa encompassing preoccupation with stereotyped and restricted pattern of interest; @) specinc attachments to unusual objects; (c) apparently compulsive adberence to spenc, non-fiinctional,routines or nhials; (d) stereotyped and repetitive motor mannerisrns that involve either handlfinger flapping or twistig, or complex whole body movements; (e) preoccupatioas with part-objects or non-hctional elements of play materials (%ch as the5 odour, the feel of their suditce, or the noisehbration that they generate); ( f ) distress over changes in small, non-tiuictionai, details of the environment.

To Whom i t May Con1am requestingtbat you be a partjcipant i n a resawch shidy tht 1am conducting f9r the

thsis requiremcnts ofa Masta's ofEduclnion dcgccc fmm the University ofManaoba The purpose ofthe siudy i s to imrestt-gatepasod interaction p b in the tteatment of adolescents with AsergCi's syndrome. As a pafticpant inthe study, 1task you to take part in an inte~ew with me where we wl discuss p u r expaieuces with individuais with Asperger's, your ~ndemaning ofindindualtswith Aspasds, and your insights h o the beneficiai aspects of persouai interaction p h for adolescents with Aspargds syndrome. Te intariew wl be taperecorc!ed, and the data b m the interview will be used in my tbesU ru medotes and as the bgsis for an;ilynS. Ifyou do not want the interview to bc tape-recordeci, 1wiii aot proaed with the interview, ad, u d b ~ e t y1,will aot bc able to include you as a participant in the study. 1anticipate that the interview will be fiom f o w f i v c to skty minutes long and tbat the two r&wquent mitii-intbews to disais my intezpretations of data h m the k t d e w will be about ten minutes long. The totai tirne requlled for your participation in this study wii be less than two hours. Your penonal i a f o d o n will be kept codideniiai d u ~ this g study. 1WU not use your name or other identaymg pasonal information about you in my data notes or i n the thesis. Once the rrpearch i s mmpleted, 1wiU erase the audio-tapes that 1have made ofthe i n t e ~ e w . During the interview, you have the ri& to r e b e to answer any questions. You also have the eight to end the interview at any the and to opt out of the study at any tirne. You rnay also request to read a copy of the i n t e ~ e w traascnpt, and portions of the interview w d l be deleted at y u r r3quest. 1 intend to disaiss my M a l interpretations with you at a foilowiip mini-interview. P : t t h i t h i s the, you wiil have the oppomimty to mise your statcmcnts or to cl* your statements. When the study is coqlete, I plan to se~d each participant a ammmy ofthe results of tlris research. Ifyou wish to obtain additional information about this study you may contact my thesis advizor, Dr. Riva Barteil, Faculty of Education, University of Manitoba, Winnipeg, Manitoba, n.s...A c, .&T2, Telephone (204) 474-9048. This research has been approved by the Faculty ofEducation Research and Ethics Cornmittee, University of Manitoba
A

I am n q u c h g that you k a participant in a resear~h shidy thrit I am conduchg fr the thfisis tequiremofa Masteds ofE&don degrcc h m the Umvasity ofMoPaoba The purpose ofthe study U to iuwsigatt pcnonal intaaction plans i n the treatmcat ofadolc~cents PM Aspergeis syndrome. As a participant in tbe sfudy, I wii u k you t o take part in an interview with me when we wiil dunusyour arpaienca as an individual with Asperger's, your
~xderstzuiding ofyourseIfd Asperger's, aud yom insights into how pasonalinteraction pians muid ben& you and ad01samts wah Aspergds syndrome. The interview Win be tapereccrded, and the data h m the htewcw wiil be used in my thesis as anCCdotes and as the basis for analysis.

,agrre to be i n t e ~ a v e d as a I, participant in a study investigating personal interaction plans in the treatment of Aspergds syndrome, and 1a p e to have the data fkom the i n t e r v i e w t r a a s c n i and u t i b d in a Mister's of Bducation thesis in Education fiom the University of Mariitoba. 1 have nad the attachecl information sheet on this study. 1understand that the intervi&v d ibe audio taped. 1understand that 1may &e to m e r any questions i n the interview and that 1 may stop the interview at any the. 1understand that I may m k w the interview trmscript and request that 1may nquest that a portion of the tninsaipt or ail of the traoJcnpt be oniitted Eorn the study. 1also understand that 1 may opt out ofthe study at any time. 1know that there wX be two foliow-up mini-inte~ews, where the intemewer wiU discuss her initial interpretations of t h data f?om my interview and ask me for fadback on those mterpretatiom. Having nadthe attached information sheet, 1understand that penonal idormation about the participants wiii be kept confidentid and that the audio-tapes wiU be emed at the end of the study.

Signature of Participant in ink

Signature of Researcher in ink

The foliowing questions wl form the baPI ofthe intdmw. 1. Some people have told p u that you h m Aspasds syndrome. How do p u thinlr Asperger's syndrome acts you? How would you k di[fcrrnt ifyou did not have Aspager's syndrome? Ifsomeone asks you what Aspaea's syndrome is, wbat do you teli th-? What does Asperger's syndrome mean to you? 0 x 1 you expiainwhio it matns to have Aspaga's by using a stoy about somalnrigthat hes happeneci to you k a u s e ofAsperger's?
2. Whai did you fint becorne aware that you wae sornehow dinmnt f i m most otha pecple? How did you make saue out of that diffasna? When did someone first use the words Asperger's syndrome with you? What did that mean to you then? Can you tdl me some stories about that tirne, when you were h s t thinking about what having Aspager's syndrome meant?

3. I am especially interesteci in wha i t I c e to be a teenager with Asperger's. Do you W : your Iife i s diffrent &om that of otha teenagers becausc you have Asperger's? How? How do you think your lift i s the sarne as that of mry other teenager? Canyou teii me about toms of the things that have b a n happening to you latdy? What parts ofthese happeaings have to do with you having Asperger's?

changed since you wen a child? Whst do you thmk you have learned cboa yourselfand Asperger's since you were a child? Cari you tell me a story that would ocplain to me what it was ke to be a chiid with Asperger's? Now can you tel me another story fiom ycur teenage years?
4. How have th&

5. What wouid you like to say to other adolescents with Asperger's?

6 . The school that you attend bas a speQal program for students with Asperger's and What do you think of that pro-? How U it helpnil for you? What ~ou!dp u M c e to change about it? What have you learned b m it?
4 ~ c ! m t sw i t h autirm

7. Some experts say that it is bard for people with Asperger's syndrome to intact socidy and that it is partidiuly difEcuIt for people with Asperger's to have social interactions with people of the same age group. So the experts would say that you would have problems interacting with other teenagers. What do you thhic ofthat idea? 1s t mie for you? Can you give nie some examples? What bas beem happening lately when you attempt to interact with mother teenager? Can you explain? 1s there a ditference for you when the person that you are intm.cting w i t h is an adult? How is it diffrent?

3. Ir'a tacher or another adult wanted to he1p a teenager with Asperger's establish a ;eiatioii:itip with another teenager, what should the adult do? What helps you when you want to

wah anotha teenager? What wouid you t d teachcis definitety not to do? V?!t advia wodd you have tOr otba adoIescentswith Asperger's whom wcirit to iritaact with thir pers? Whea you are pianning to spend time with another teenager, wbat do you think about beore you get t o g e t h with penon?

~wnd time e i t a

9. Now that we have bn doing some taiking about A s p a e d s syndrome, U there mything eise that you wouid like to say? tlaw you thoofsornethmg whilc we have ban tallyig? D o you have any questions for me? How wouid you aim up your thoughts and feelings about Aspegds syndrome?

Th5 foilowing questions wili form the bask of the iatenriev~

1..What does i t meaa to you to have Asperger's syndrome? Can you explain wbat it means to have Aspaeefs by using a story about sornething that bas happened to you because of

Asperger's?
2. %en did you first becorne awam tbt you were somehow dinaent fiom most other people? How did you make sense out ofthat diffecen? When did sorneone &st use the words Apergds syndrome with you? What did that mean to you? Can you tell rw some stories about the time when you were fkst considering the labei of Aspergefs syndrome? 3 . 1 am especiany interesteci in w&atit was k e for you as an adolescent with Asperger's. Can p u teli me some stoties about wbat happenedto you as an adolescent that you think were dEr:rent fkom the experiences of most adolescents?
4 . How have things changed for you shce you were an adolescent?. What do you think p u have leamed about yomeIf a d Asperger's since you were an adolescent?

S. What would you likc to say to adoiescents 4 t h Asperger's?

6.when you were an adolescent you were part of an autism program in school. What do y nt l SU ~ leamed nom that program?

7 . One part of the autism program encouraged socid interactions for the students in the promam. How did that work? Can you tell me some stories about interacting with other people VA$? you were in the autism program? If you were advishg the teachers who run the program t . 4w ~u i d you tell them to do to help adolescents with Asperger's interact with others? What y u stiU use today that you learned about interacting with others while you were in the autism
. 5y7x7
Y

2. W~at have you Iearned about interacting with others since you left the autism program?

Zow do you thhk the teachers kithe a u t h program codd use wbat you have leamed when they are phmhg for a d o l m with ? s -

of rirythiag eise that you want to say or of another story that YOU d d fie to t a tbrt arplslis what i ti s like to have Asperger's? Is there anphing that you wodd Eke to ask me?
9. hmDg the interview have you thai@

nie foiiowing questions wl fom the ba& of the interview:

1. At what age wu your child diagnoseci as h a * m e t s syndrome? What did you tbidz dthat diagnosis when it was fkst made? You hava had some t h e to adjut to the diagnosis of Aspergds syndrome. Whrt does the diagnosis mean to you now? Can you teil me some storia about your chd that wodd CO* the diagnosis of Asperger's syndrome? Are there :orne aspects ofyour chiid's pemnaiity and bdiaviour that do not seem to indicate Asperger s?

2. From your cxperience with your child how would you d e h e Asperger's syndrome? Can you tell me some storias that illustrate your defhition of Asperger's?
3. Obviousiy you have many yean ofeicpaience h g with your chiid. Can you d e s a i the experience of iiving with an adolescent who bas Asperges syndtome? How has your child c h g e d as hdshe has movd into adolescence? How have you changeci as you have l m e d more &eut your chiid and more about Asperger's syndrome?
4. Ifyou codd stand back and obsewe yourselfas you interad with your child, how milm p u desmie your behaviour? How bas your behaviour changed over the years of interacting w i t h your chiid? C m you tell m e some stories that would inustrate how you interact with pur chiid?

5. How do you organize and make rneaning out of-living with an adolescent who has Aqergets syndrome? What wouid you I&e to teii 0th- about your child that would help them to i ~ ~ ? e ~ rhim? * n d What would you desmie as the joys of living with an adolescent with s?cgefs? What are the trials? What has surpriseci you about your child as he iives with Aspergds?

6. Social interaction is a prime deficit in Asperger's syndrome. Is this mie of your child? C<myou teLi me an anecdote that would illustrate the diflEiculty that your chiid has with social hnraction? Over the yean have you discovered any strategies that help your child with social in:%raciion?What would you advise others to do when they are atempting to interact with your sUd? ?.%at elements are important to include when social interactions are planned for your &k!? Cm you teil me a story about a time when you obsewed a very positive social interaction For yov~i~ ddd? Why do you thinlc this partidar social interaction worked weil? Can you tell me

&out a social interaction that became a disaster for your chiid? What made thu experience nich a h"?cr?

7. As WC have bccn taikng have yw thou* ofrny other points that you would Ire to d e &out Aspaeds and your a d o l d Hkve yai thought ofanother woy ofexpfsifiing what P , p a g d s means to you? Ara thcm more storics thiu ilhistrate fc with AspaBds ,yndome that you wodd Wn to tell?

The foiiowing questions will form the basis of the interview:

1. I w o u l d iike to know somahiog ofyour histocy ofworking with adolescents with kqvgsger's syndrome. How long bavc you baa workiug with adolescents with A s p a g d s

,yn&ome? When did you first encounta a studcn who had been diagnoseci as baving Asperger's s~~orne What ? what your eicpaience with himor her? What did you think of A s p a g d s syndrome as a diagnosis at that the? How would you bave defined i t then? Were there other a ~ d e n t that s you have worked with that would fit in the Asperger's category but that were not ~Eciially diagnoseci as having Asperger's? What criteria do you use to M someone into the Asperger's category? Can you teil me some stories about your nnt expcrienccs with adolescents vnth Aspergds?

2 .You have now @ed some experience with workiag with adolescentsw i t h Aspergds. 'F~ttt are ,me ofthe important tbings that you have lcarned abwt adoiescents with Asperger's? 1-Ionr do you U you have cchanged in your approach to adolescents with Asperger's? Can you describe some ofyour more ment experiences with adolescents with Asperger's?
3. How wouid you describe Me with adolescents with Asperger's to someone who has uever eqerienced it? How do you think you bave changed as you have become monand more Isiowkdgeable about the Asperger's wmmunity? W b t do you nad yourseffdoiag as you interaa with somcone with Asperge?? How do you act di&atly than you nnt did when you deait with adolescents with Asperger's? What meanhg do you make of Asperger's syndrome now? 4. Research indicates that the ability to interact socidy is one of the prime deficits of Asperg-c's syndrome. Do you agree or disape w i t h this statement? Can you tell some nmdotes that lustrate your m e r ? When you are planning social interactions for adolescents TIXI Lsergefs what elements do you include? Why? What would you be sure not to do? Why? C a yoli describe a situation where social interaction was a positive atperience for an adolescent ?rith Psparger's? What do you think made this social interaction successful? Can you give me an m a p l i : of a social interaction that failed completely? Why do you think this interaction was such ? . di ;izt&

5. Ifyou were advising parents or other teachers about how to facilitate social interactions

for adolescents wh AsperBds qnclmrne, what would you teil thsm to do? W h a t do you tbuiL vz your most suarssallsocirl atperieace with an ado1esceat Mth Asperger's syndrome? Why did this work? What social Qcpaience with an adotesceat with Aspcrsds syndrome airprised p u the riost? Why? What did you leam h m thir expuience?
6. How do your experienca with social h t d o n s with adolescents with Asperger's syndrome help you to UZLdemtamd Asperger's? How do you malte m d g out ofAsperge&? 7 .Have you thought ofany more anecdotes that you wouid ke to te me about lifwith adolescents with Aspagds syndrome? What wodd you B e to state about Asperger's to coociude this interview?

1. Can you teil me how long you bave been workbg with adolescent -dents who have Asperger's syndrome? How many ofthe students y w have wotked with wouid M the category of Asperger's s y n d r o m e ?
2.1 would likt you to tbrmtback to your first eXpenence ofworking with an adolescent whc had Aspergds syndrome. What did you 6rst notice about him? How did you thiok kspergefs syDQomemade him &&cent fiom otha adoIescents? What cci you notice about yomelfas you started to work with him? At diat time, how would you have explaineci &pergYs syndrome? What did the tam Asperge& syndrome meanto you? Can you teii me :orne stones about your kst experiences with this adolescent and with Asperger's syndrome?
3. You have now worked with studeats with Aspergds syndrome for a number of yean. V.Qqt are some ofthe tbiags you have l m e d about adolescents with Aspergets syndrome Ui tbat the? How do you think you have changed in that the? Wbat do you see yoursdfdohg as you work with an Asperger's adolescent now? How wodd you dehe Asperger's syndrome now? What has surpriseci you about adolescents with hperger's? Can you teU me some more recait stories about your work widi adolescents with Aspergds?
4. Experts believe that one ofthe prime deficits i n Asperger's syndrome is the ability to interact socidy. Do you agree with this statement? What bave you observed in your dealings a i 3 with Aspergefs that would confinn this statement? Have you obsened :iri-.5mz that wouid disprove this statement? Can you tell me sorne stones about interactions iritt~ z<olescents with adolescents that would austrate what happens in social interactions with r.5ol.scent.s vit11 Asperger's? What do you find youmlfdoing when you interact with adolescents wi;k Csperger's? What would you advise &ers to do? Eyou were planning a &al interaction Lor m adolescent with Asperger%, what elemena would you include? M a t would you be sure :i2t m do? Vniiit do you think this means when you t h i i of what it is to have Asperger's?

5 . From our dimusion have p u thou@ ofany otha points that you would iike to make about vortkhg with adolescentswith Aspasds syndrome? Do pu have some more nories that would iiiumsta what we hnnbantallring about? b th= amytbbg mon that you would k e to zdd?

The foilowing questions wiU formthe basis ofthe i a t d ~ w :

1.1wodd ike to know somethingofyout bistory ofworking with adoiescents with Aspergefs. W h did you start workmg with a dient who had ben diagnosecl as hving A s p a g d s syndrome? What did you natice about hllnor ha? What did you notice about ;romeifss you beganto work with this cIient? How wouM you have explaincd h p r g c r ' s syndrome at this the? H o w wodd you have used pur kaowiedge of speech aad bguage to diferenthte this client h m your other adolescent ciients? Can you tell me some anealotes that iliustrate what it was Lb for p u to work with tbP client?

2 .You have now bcea working with individuais with Aspergds syndrome for a -ber of How do you uUnk p u have cbaagcd i n that the? Wbat do p u obsewe yourseifdoing a d t k k @ as you begin t o work with an adolescent with Asperger's? What do you tbink you b v e l m e d about A p q e r ' s syndrome? How would you d e 5 e Asperger's syndrome now? How would you explain Aspasds om a speech andhguage paspeaive now? Can you descnie an incident that chaaged your thinkiag about Asperger's? Can you d&be an incident that reaiiy confirmed your ideas about Aspergefs syndrome? What has surpriseci you as you have ~mrked with adolescents with Aspergds ?
~J~WJ-

3. Research has indicated that the ability to interact s o d y is one of the prime decits of Pspxger's syndrome. Has this baa your acpaimct? Do you work with ciients who have Assergef s syndrome amund plamhg sociai interactions? What do you thinlr should be kiuded in mch social interaction pianning? What should denmtdy be avoided? Can you d e s m i wbat ~ C consider Q to be a positive& s interaction expaiena of one ofyour dients? What do you iiidc made it successfu? Can you describe a social interaction experience of one ofyour clients that wm a disaster? What made i t a disastefl What should happen dinerentiy next time? What do these anecdotes about social interactions of clients with Aspergefs syndrome tell you about Asperger's syndrome?
4. What other conclusions have you m h e d about Asperger's syndrome in adolescence? 7rhil t advice would you give to other profeonals workuig with adolescents w i t h Asperger's? V n t advice would you give to parents and fiends of adolescents with Aspergets? Do you have more mecdotes thar iiiustrate what it means to you to approach the worlds of adolescents with - zyx5ec'8 \.bat would you like to add to thk discussion?