erika peterson

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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 michelle@socialthinking.com. -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