erika peterson
DESCRIPTION
AS and I Erika Peterson (and other people) IusetheabbreviationASinabroadercontexttotalkaboutgeneralcharacteristicsofthesyndrome, notthediagnosisitself. InthispaperIusetheabbreviationASasanabbreviationofAsperger’ssyndrome. ThisisnotanoverviewoftheimpersonaleffectsofAS. MichelleGarciaWinner MyStory Conclusion Tamsin SashaTRANSCRIPT
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AS and I (and other people)
Erika Peterson
A.S. ErikaLeePeterson
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Author’sDisclaimer InthispaperIusetheabbreviationASasanabbreviationofAsperger’ssyndrome.
IusetheabbreviationASinabroadercontexttotalkaboutgeneralcharacteristicsofthesyndrome,
notthediagnosisitself.
ThisisnotanoverviewoftheimpersonaleffectsofAS.
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TableofContentsMyStory
MichelleGarciaWinnerSashaTamsinCIP
Conclusion
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Accordingtothemedicalworld,Asperger’ssyndromeisanameforaneuro-biological
Disorder,alabelgiventopeoplewhohavetroubleconnectingwithotherpeopleduetosocialcognitive
impairmentandsoinsteadendupconnectingwithfactsandobjects.Itisaverymildformofautismor
anautismspectrumdisorder.Forsomeonewhohasit,canmeananinvoluntaryisolation.
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AllthroughoutelementaryschoolIfeltlikeIcouldfeelmyselfrunningintowallsthatweren’t
there,trippingoverthingsthatnooneelsesaw.Myfamilyhadalwaysknownthattherewassomething
notquiterightaboutme.Iwastestedata
youngage.MymomalwayssaidthatwhenIwasaboutfiveI“playedlikeafouryearoldand
talkedlikeatenyearold.”IwasdiagnosedwithADD(attentiondeficitdisorder)inthesecondgrade
andputonAdderall(astimulant).
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InelementaryschoolInoticedmorethingsgoingwrong,likethefactthatmy
friendshipsdidnotlastaslongaseveryoneelse’sorthatatrecessIwouldoftengotothelibraryand
readorplayinmyimaginationinsteadoftalkingtootherpeople.Infifthgrade,Igotintoalotoftrou-
blebecauseIwasn’tsureifpeoplewereplayingornotwhentheyinsultedmeorbecauseIwouldsay
thewrongthing.Thatsummer,Igotintoabigfightwithmycousinsandafterthatmymomdecidedto
takemeinfortreatment.Iremembermyparentssaying“whatshouldwedowithyou.”Isuggestedtak-
ingmetoashrink.IthoughtIwaskidding.Myparentstookmeseriously.
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IwasdiagnosedwithAsperger’ssyndromeinthesixthgrade.Irememberwhenithappened.Iwaswith
myshrink(Ialwayscalledhermyshrinkbecauseshehadawayofmakingonefeelsmall),LaurieLeven-
thallBelfer.ShetoldmeIhadASandshowedmeapicturebookaboutaboyobsessedwiththeweather.
AtthetimeIdidn’tknowwhatitwasreally.Ittookyearsoftherapytodiscernhowthismakesmediffer-
entfromallotherchildren.
TomehavingASmeansthatIwillalwaysbealittleremote,alittlebitremovedfromthepeople
aroundme.Iwillfrequentlyforgettocommunicatewiththepeoplearoundmeandthuscreateapleth-
oraofmisunderstandings.Iamasheadstrongandstubbornasarock,andIgettiredveryquicklyfrom
toomuchsocialinteraction.Ihadtobetrainedhowtointeractwithpeopleamongamillionotherlittle
things.
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IamveryluckyinthefactthatIhaverarelytoneverrunintosomethingthatIamutterly
incapableofdoing.Iamunlikemanyofmy(AS/NLD)peersinthatway.BothSashaaswellasothers
havehaddifficultyinschool,andmyfriendTamsinhadenormoustroublewiththemathportionofthe
highschoolexitexam.Shetoldmeaboutitinaninterview.Tasksthatmostpeopletakeforgrantedare,
forme,difficultandtakeupexcessiveamountsoftime.Ialsocandothingsotherscanneverdreamof
withthegreatestofease.
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MichelleGarciaWinner
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Michelle Garcia Winner is a speech-language pathologist who specializes in the treatment of students with social cognitive deficits, which includes diagnoses such as Asperger syndrome, autism, and non-verbal learning disorder. She runs a private practice in San Jose, CA where she works directly with cli-ents, consults with families and schools, and travels globally giving workshops. Contact her by e-mail at [email protected]. -Excerpt from Aspergers Syndrome Across the Home and School Day
In �th grade my mom enrolled me in Michelle GarciaWinner’s(MGW’s)clinicforsummercampandweneverstoppedgoing.Ihavebeenintherapytherefor7yearsnow.Theclinicisnotyourtypicalsupportgroup.Wedonotgatherinacircleandtalkaboutourfeelings.It’smorelikeschoolthenlikeanythingelse.
BasicallywhatgoesonisthatMichellegivesuslessonsandwegivehersmartmouth.Thelessonsarethingslike,thefourstepsofcommunication,self-monitoring,andotherthings.Michellesellsbooksfullofworksheetsthatsheherselfwritesforthepurposeofsocialcognitivedevelopment.
��Welaugh,wecry,wesuffer.Intheinterveningyears,Ihavestolenhercandy,gonetoherhouse
andmetherfather.
Manygirlshavecomeandgonethroughourgrouplikefoodthroughadigestivetract.Sixofus
haveended
upstickingaroundandformoursocietyofthesociallydysfunctional;Kristy,Kristen,Tamsin,
Anna,
Sasha,andmyself.Weallattendpartiestogetherandweallknoweachother,whichisextremely
rareforasocialskillsgroup.Wehavenowbeensplitupintotwosocialskillsgroupsbutthewhole
remainsunbroken.Not
allofushaveadiagnosisofAS.TamsinandSashabothhaveNLD(nonverballearningdisorder).
ThemaindifferencebetweenASandNLDisthatpeoplewhohaveNLDhavemoretroublein
schoolthenpeoplewhohaveAS.Mostofushavethesameorsimilarbehavioraldysfunctionand
needthesameorsimilarkindsofsupport.ForthesakeofconvenienceIinterviewedTamsinand
Sasha.
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ThesearethehideousmonkeypuppetthingsMichelleboughtinTibet.Michelle’sbooksareknownallaroundtheworldsoshemakesmostofhermoneybydoingconferencesinfaroffplaces.afterseveralsessionsinhergroupyoumightstarttoseewhythisisappropriate.Whensomeoneisfrequentlyinter-ruptingandcontrollingyourconversationyoudostarttofeeltheropesofproprietyclosingin.
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MichelleGarciaWinnerhasaveryinterestingpersonalhistory.Hermotherwasadescendentofone
oftheoriginalsettlersontheMayflower.HerfathersurvivedtheHolocaustbyknowingaboutthreedif-
ferentlanguagessotheNazi’slethimlive.HecametotheUnitedStateswiththefriendshemadewhile
beingliberatedfromtheconcentrationcamps.Hecamehereandbecameanarchitect.Henowregularly
embarrassesheratherlecturesaroundtheworld.
Inallmylifetherapyisbasicallytheonethingthatstayedthesame.It’sthethingthatgotmemy
firstandonlyjobandit’stheoneIhavebeentothemostpartiesfor,thoughtheyhaveallbeentherapy
parties.SlowlybutsurelyAsperger’ssyndromebecameadefiningfactorinmylife.
It’stheextracurricularthatdefinesmesomekidshavebandothershavedramaorchoirorcharity.
Me,Ihavetherapy.
��conversationtogivecritical
feedbackonhowevery
bodydid.Thisgetsex-
tremelyannoyingandold
aftera
while.Thenwearegraded
onbodyposture,questions,
comments,howmuchyou
participatedinthediscus-
sionhowmuchyoudidn’t
participateetc.Shethen
teachesalessonandre-
views
other,olderlessonsaswe
needthem.
Allofusareveryluckyto
haveherasatherapistsince
shedoesn’ttakeon
newclientsanymore.
(Sincesheissupposedly
worldfamous)However
thisisthekindofluckthat
youwishwouldpickupand
annoysomeoneelse.Most
ofhersessionsinvolveher
havingustalktoonean
other,theninterruptingand
completelysquashingthe
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Michelle’sauntpaintedthispicture.Herbrotherblewtheglassbowls.
ThisisrelevantbecausemostoftheparentsofchildrenwithaspergersareArchitects,
ScientistsorArtists.BecausesomanyparentsofAShavevisualgifts
thereisahighincidenceofart.BothofMichelle’sdaughtersHeidiandRobynaregiftedartists.
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SashaDesai
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“Well,itshadaverymajoreffectonthewayIlookatthingsandthewaythatIhavegrownup
withpeople.ThewayIhaveinteractedwithpeoplesometimes;notbeensofriendlybecauseIdidn’t
understandumthewayIwassupposedtocommunicatethem.”
-Sashaonhowherdiagnosisaffectedherlife.
MycomradeSashahasanexperiencenotfarremovedfrommyown.EventhoughSashahas
NLD(NonverbalLearningDisorder)herchildhoodyearsbearastarkresemblancetomine.Inthisin-
terviewexcerptshetellswhateffectNLDhashadonherlife.
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Andtheydidn’tunderstandthatIdidn’tunderstandsoIhadahardtimegetting
toknowpeople.So,that’skindofhadabiginfluenceonme.EversinceIrealizedthatIhadadisability
Istartedworkingwiththerapistsonstrategiestocopewiththat.I’vebeenabletomakemorefriends
moreeasilybecauseI’verealizednowwhatI’mdoingwrongsoIcanfixit.BeforeIdidn’tknowthatI
hadaproblem,butnowIdosoit’seasier.It’salsomucheasierformyfamilybecausetheyunderstand
thatitsnotmyfaultwhatI’mgoingthrough.
Thelastsentenceofthistestimonialandthephrase“itsnotmyfault”giveaprettyclearpictureof
thetypeofgriefshehashadtoputupwithovertheyearsandthesevenhellsofgriefthatpeoplewith
autismspectrumlearningdisordersgothroughingeneral.
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Yeah,likewhenIwaslittleIusedto
falloffmychairoruhnotlookatmy
momwhenIwaswhenshewas,not
payingattentiontomymomwhen
shewastryingtotalktomeorgetmy
attention.Andsheusedtogetupset,
butnowsherealizesthatitsnotme
at’stryingtobeannoyingorrude
itsjustthelearningdisabilitypartof
me.
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�� Thisissomeofmyart.
Idrewthis.Itwasorigi-
nallysupposedtobeair
headaheadlikeabal-
loonbutIdidn’thave
room.
Iamveryluckyinthe
factthatIhaverarelyto
neverrunintosome-
thingthatIamutterly
incapableofdoing.I
amunlikemanyofmy
(AS/NLD)peersinthat
way.BothSashaaswell
asothershavehaddif-
ficultyinschool,and
myfriendTamsinhad
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TamsinKearns
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AlsoIhavedifficultiesinmathespeciallyuhbasicallyeveryyearineveryclass
AndofcourseitaffectsmewiththemathCASHEEexamthatIhavetotake
ForthethirdtimeyeahIlltrytopassitbut.....Yeahitsreallyhardthatpartof
CASHEE(cassie)
IthinkIpassedthefirstpartandIdefinitelypassedtheEnglish.
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InadditiontoNLD,Tamsinalsohasperceptualproblems.Shethinksthingsarefartherawayorcloser
thentheyactuallyare.Tamsin’shobbyisschool.Sheisaveryhardworkerandisusuallyverybusydoing
variouskindsofstudying.
Tamsinusedtohaveahardtimeunderstandingwhenpeoplewerebeingfunnyandwhentheywere
serious.Sheusedtogetintoalotoftroublewiththat.Tamsinworksatapreschoolduringthesummer
anddoesalotofvolunteerwork.Tamsinis18.Likemeshealsocannotdriveacar.Tamsinisalso
veryserious.IftamsindidnothaveNLDshewouldprobablybeanhonorsstudent.
Tamsinisverystubbornaboutherschedule.Shetriesnottoletanythinginterferewiththeschedule.
Tamsinplanstogotofoothillcollege’sworkabilityprogram,whereyoudomanuallaborand
takeeasyclasses.
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��Thisyear,twoprogramsthatsupportandaidinde-
pendentlivingarestartinguphereinthebayarea.
MymotherdoesnotthinkIammatureenoughto
surviveonmyownwhenIgotocollegeifIgoto
normalcollege.Noneoftheothergirlswhoareover
eighteenhavemovedoutoftheirparents’homes.
IalwaysthoughtIwouldliveatmyparent’s
houseandgotothelocaljuniorcollegeandtakethe
busthereandback.NowIamnotsocertainofwhatI
amdoing.ThisisMichaelMcMammon,anadult
withAspergersSyndrome.Heisdesigningoneof
theindependentlivingprograms.
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�� McMammondrewthesepictures.Igottogettoknowthepeoplefromthecollegeinternshipprogram
(CIP)andwehadablast.UnfortunatelyCIPcosts70,000dollarsandmyparentsareremodelingtheir
kitchen.Itwastooexpensiveforme.
NowIamnotsocertainofwhatIamdoing.Inowhavetheoptionoflifeawayfromhome.IfItrythisI
willbethefirstinourgrouptoattempttostepoutintothebigbadworldoutsideoftherapy.OnceagainI
willgoforth.Nextyearwillbemyfirsttimeinsevenyearswithnotherapy.
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McMammonwrotethisatapoetryslamhewenttowithhisbrother.ItsaboutAspergerssyndrome.
It’scalledSynchronicity.Itsays
Understandinghowyoufeel
seeingyouremotionsandrelating
enjoyinglisteningtoitall
thecreativity
thehonesty
theempathy
theemotion
wantingtorelatemoreandonadeeperlevel
toabsorb
tolearn
toshare
tobewith
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��Youcan’ttalkaboutAspergerssyndromelearningdisor-
derswithouttalkingaboutthesupportnetwork.Ittakesa
massiveamountofhelptobesuccessfulwhenyouhavea
disabilitythatnooneunderstands.Itissomethingyou
can’tdowithoutalotofpeoplewholoveyou.
McMammonhasadonkeyruleforASstylestubbornness.
Ifyouaskfivepeopleandtheyallsaythesamethingthen
youarewrongandneedtochangeyourways.
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Ourmothersareallfriendsandtheyhaveformeda
mommy(friendship)network.(Guesswhattheyhave
incommon.ThismommynetworkiswhereIgetmost
oftheinformationabouttheothers.Ourmothersgo
todinners,giveeachotherandMichellepresentsand
Christy’smotheractuallymakesquiltsforallthegirls
inthegroup.Theygossipaboutallofusandmymom
tellsmealotofit.ThisisoneofthequiltsChristy’s
mom,Diane,madeforSasha.
��Allthegirlsinourgrouplivewiththeirparents.Someareasoldas20or21.Everyoneinour
groupisover17yearsold.PeoplewithASmaturemoreslowlythenmostotherpeople.
Alltheothergirlsinourgroupliveathomegotojuniorcollege,evengoingtojuniorcollegethey
stillsometimeshavelotsoftroubleinschool.Theyworkandhavejobs,althoughmostofthemdo
nothavecarsordrive.
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ASandAnimalsPeoplewithallkindsof
Disabilitiesbenefitfromanimal
therapy.PeoplewithSocial
CognitiveDisordersarenoexcep-
tion.BecausePeoplewith
AShavelongerattentionspans
theycanspendgreateramounts
oftimewithanimalsandnotget
bored.
McMammonwritesverseabout
hisfurryfriends.
Becauseanimalsdon’ttalk,manycommunicationbarriersarere
moved.Idon’tknowifanyofthisisproven,butalmostallthegirls
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Sasha’sdogToby.HeisnewandSashahas
beenbeggingforyearstogethim.Heisnowa
puppy.
AdogshapedpillboxfromSasha’scollection.
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Mymomisexcitedandthrilledformetobejoiningthereal
world.Shebelievestheseprogramswillhelpmetrainforthe
restofmyindependentlife.Ilongforthechancetodeclarein
dependenceandbuildthehouseofmyownlifefurnishedwith
myownchoicesdecisionsandskills.Iwanttoleavemyhome
andtestouttheindependentlivingfacilityofmychoice.Sashais
goingtojoinmeatanindependentlivingfacilitynextyear.We
mustallnowfacetheultimatechallenge,breakingfreeandsup-
portingourselvesasindividuals.Wemustbecomefullyfunc-
tioningmembersofsociety,withnoneofthehandicapsweare
usedtohaving.IcanonlyhopeforthebestasIamseparated
fromeverythingIhaveeverknownandhopethattheskillsthat
IhavelearnedherewillbeenoughtogetbyonforbothSasha
andIwhenwedepartfortherealworld.Wishusluck.
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TheEnd