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Intheirownwords:Theexperiencesofstudentswithhigh-func6oningau6sm/Asperger’sdisorder
a<endingcollegeoruniversity
RashmeenNirmal,Ph.D.SunnyHillHealthCentreforChildrenBri6shColumbiaChildren’sHospital
November17,2015
(Nirmal,2015)
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ScopeoftheLecture
• BriefReviewoftheLiterature• FactorsrelatedtoPostsecondaryFunc6oningforstudentswithASD• ResearchStudy-Results• FutureDirec6ons• Ques6ons*pseudonymsareusedinthispresenta6ontoprotecttheanonymityandconfiden6alityoftheresearchpar6cipants
(Nirmal,2015)
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BackgroundInforma6on
• Au6smSpectrumDisorder(ASD)isaneurodevelopmentaldisability
• Increaseindiagnosis(1in68children)• Morechildrenarebeingiden6fiedwithASDwithoutsignificantcogni6veimpairment(High-Func6oningAu6sm;HFA)
(APA,2013,Brughaetal.,2011;CDC,2014;Honda,Shimizu,Imai,&Ni<o,2005,Howlin,Goode,Hu<on,&Ru<er,2004)
(Nirmal,2015)
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BackgroundInforma6on
• IncreaseinenrollmentofstudentswithHFAinpostsecondaryeduca6on
• Aspira6onsofa<endingcollegeoruniversity• Poorpostsecondaryeduca6onaloutcomes(e.g.,Camarena&Sarigiani,2009;Fombonne,2005;Hurewitz&Berger,2008;Nevill&White,2011;Sha<ucketal.,2012;VanBergeijketal.,2008)
(Nirmal,2015)
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PostsecondaryAspira6ons
• Camarena&Sarigiani(2009)– Inves6gatedpostsecondaryaspira6ons– 21adolescents(ages12-18)withHFAandtheirparents
– Allvieweda<endingcollegeasan“importantaspira6on”
– Confidentthattheywould“actually”a<end– 57%oftheadolescentsexpressedpursuinga4-yeardegree
(Nirmal,2015)
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PostsecondaryOutcomes• Sha<ucketal.(2012)
– USDept.ofEduca6onNa6onalLongitudinalTransi6onStudy-2– 34.7%ofyouthwithASDa<endedcollege(n=680)– Lowestpar6cipa6onratecomparedtostudentswithspecificlearning
disorder(SLD)andspeech/languageimpairment(SLI)– YouthwithASDathighriskfornoenrollment
• Weietal.(2012)– LesslikelytoenrollcomparedtostudentswithSLD,SLI,hearingor
visionimpairment,orthopedicimpairments,otherhealthimpairment,trauma6cbraininjury
• Drop-outsoonamerentry(e.g.,Glennon,2001;VanBergeijk,Klin,&
Volkmar,2008)
(Nirmal,2015)
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Factorsaffec6ngPostsecondaryFunc6oningforYoungAdultswithHFA
• SocialInterac6onandCommunica6on– Roman6crela6onships
• RestrictedandRepe66veBehaviours– Sensorydysregula6on
• Adap6veBehaviourFunc6oning– Independentdailylivingskills– Omennotcommensuratewithcogni6vefunc6oning
(Nirmal,2015)
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Factorsaffec6ngPostsecondaryFunc6oningforYoungAdultswithHFA
• AcademicFunc6oning– Execu6vefunc6oning– Educa6onalaccommoda6ons– Disabilitydocumenta6on
• Self-AdvocacySkills• PsychiatricComorbidity– Anxietyanddepressivedisorders– Occursinupto65%ofadultswithHFA
(Nirmal,2015)
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Significance/NeedforResearch
• ThereisapaucityofresearchintheareaofstudentswithHFAinpostsecondaryeduca6on
• Understandingtheexperiencesofthesestudentsmayprovidevaluableinsightintotheirfunc6oninginthiscontext
• Neededtosupporteffec6vetransi6onandpostsecondaryprogramming
(e.g.,Camerana&Sarigiani,2009;Fombonne,2012;Gelbaretal.,2014;Howlin&Moss,2012;Welkowitz&Baker,2005)
(Nirmal,2015)
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ResearchQues6on
Whatisthemeaningofthelivedexperiencesforstudentswithhigh-func8oningau8smorAsperger’sDisordera<endingcollegeoruniversity?
(Nirmal,2015)
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ResearchMethod
• Interpre6vePhenomenologicalAnalysis(IPA)– Examinesthemeaningofpersonalandsocialexperiences
– Par6cipantsareviewedasexperts– Theresearcherplaysanac6veroleininterpreta6on
(Smith,Flowers,&Larkin,2009)
(Nirmal,2015)
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Par6cipants
• 12studentsdiagnosedwitheitherHFAorAsperger’sDisorder(9males,3females)
• Allpar6cipantswereenrolledineithercollegeoruniversity
• Undergraduatestudents(years1-3)andonegraduatestudent
• Agerange18-28
(Nirmal,2015)
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Procedures• Recruitment– Postsecondarydisabilityoffices– Communityagencies– Au6smCommunityTraining-BCandSFU’sAu6smandDevelopmentalDisordersLab
• TelephoneScreeningInterview• InformedConsent• BackgroundInforma6onForm
(Nirmal,2015)
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Procedures
• DataCollec6on– In-depthsemi-structuredinterviews• Meanlength=75minutes
– Follow-upInterview• Rangedfrom30-45minutes• Membercheckingprocess
(Nirmal,2015)
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Procedures• Smith,Flowers,&Larkin(2009)IPADataAnalysis
– Transcriptswereanalyzedcase-by-case,star6ngwiththefirstinterview
– Systema6c,itera6ve,andinterpre6ve– Sharedexperiencesacrosspar6cipants– Researchertakesanac6veroleininterpreta6on– Eachanalyzedtranscriptinformedtheanalysisofsubsequenttranscripts
(Nirmal,2015)
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Procedures
AnalysisofTranscripts• Macro-analysis(globalanalysis)• Micro-analysis(codingofmeaningunits)• Visualrepresenta6onsofthedata(graphicorganizersandchar6ng)
• Emergingbroadthemesandsubthemes
(Nirmal,2015)
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Procedures
• EnsuringScien6ficRigourandCredibilityoftheResearchFindings
– ResearcherReflexivity– PeerReviewer– MemberChecking– ThickandRichDescrip6on– ExternalAuditor
(Creswell,2009)
(Nirmal,2015)
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ResearchFindings:BroadThemesandSubthemes
ManagingAcademicExpecta0ons
DifficultywithOrganiza6on
TimeManagement
FeelingOverwhelmed
ExperiencingSupport
SupportfromProfessors
SupportfromCampus
Organiza6ons
PeerSupport
FeelingSupportedthroughCommunityandGlobalSystems
Suppor6ngOthers
ManagingAu0smSpectrumDisorder
andRelatedSymptoms
ManagingASDSymptoms
ManagingRelatedSymptoms
ReferencetoorInfluenceofPastExperiences
HavingaSenseofApprecia0on
SocialApprecia6on
AcademicApprecia6on
UnderstandingAu0smSpectrumDisorderbyOthers
andSelf
ManagingtheTransi0on
ManagingtheTransi6onfromHigh
School
Naviga6ngaNewEduca6onalSystem
EnteringaNewSocialWorld
DesireandUncertainty
DifficultyIni6a6ngSocialInterac6on
FollowingaSocialTemplate
FindingSocialOutlets
(Nirmal,2015)
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Theme1:ManagingAcademicExpecta6ons
• DifficultywithOrganiza6on• TimeManagement• FeelingOverwhelmed
(Nirmal,2015)
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“GeAngassignmentsinon8meisverydifficultforme.BeinganAspie,losingthings,beingmessy,professionallymessy.Missingalotdeadlines.Likemycrea8vewri8ngprofessorhadtogivemeextensionsonsomeoftheassignmentsbecauseIkeptonmissingthem.ThisiswhenIwasdepressed,butatthesame8meIwass8ll…doublebookingappointments...”
(Nirmal,2015)
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“I’llprocras8nateand…youknow,losethecourseoutlineandthenI’llfindthecourseoutlineandI’llbeliketothedisabilityoffice…thistestisthis8meandthatdoesn’tworkforme…andit’slike:Oh,wellifyouhadaproblemyoushouldhavetalkedtouslikeamonthago…”AndIwaslike:Ididn’tknowamonthagobecauseIdidn’tlookonthesheet…itisafailingonmypart,butit’sstuffthatI’mnotverygoodat.”
(Nirmal,2015)
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“Ithinkthatpeoplewhohaveexecu8vedysfunc8onshouldbeabletohaveadifferentthing…likethere’sjustsomanysteps…it’sreallycomplicatedandreallyexhaus8ngandsome8mesIdon’tgetmyexamaccommoda8onbecauseit’stoomuchwork…I’mlike:Ican’thandleit.”
(Nirmal,2015)
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“Ionlydid,outoffourIonlydid,Ionlycompletedone.”“WhenIfirstcamehere[tocollege],ItooktwohardcoursesandIdroppedthefirstonepre<yfast.”“…whenyouhavemanydifferentcourses,it’sveryeasytogetmoreandmoreanxious…[takingfivecourses]wastheworstdecisionImadethisyear…”
(Nirmal,2015)
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Theme2:ExperiencingSupport
• SupportfromProfessors• SupportfromCampusOrganiza6ons• PeerSupport• FeelingSupportedthroughCommunityandGlobalSystems
• Suppor6ngOthers
(Nirmal,2015)
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“Ishutdownali<lebit…Ifeltanxietybuildupandangerandfear.Iwasreluctanttoaskforhelp,asusuallyam.Butthe8meIstartedsaying:Idon’tknowwhattodo-‘help,’they[professors]didn’tknowwhattodoeither;theydidn’thavethesupportforhelpingsomeonelikeme.”
(Nirmal,2015)
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“Someofthem[professors]areactuallyveryquiteposi8ve.Umforexample…myanthropologyteacher,whenIwasinastateofdepressionIcametohimandItoldhimaboutmyexperiencesandItoldhimaboutmyAsperger’sandhewasveryjovialaboutit.”“…lastterm,mywebdevelopmentinstructorwasreallyhelpful…formymid-termorformyfinal,heactuallycameintocheckonme[atdisabilityservices]…toseehowIwasdoing.”
(Nirmal,2015)
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“Well,you’vehadanextension,notallowedtobestressed.”“Atuniversityit’sdifferent,they’res8llgreat…I’vebeenreallygratefultohavethembutit’satotallydifferentsystem…morestaffmemberswithawayhigherworkload.So,inordertotalktosomebodyorgetsomehelp…youoZenneedtobepreparedlikeweeksinadvance…likethestuffIneedtodoinordertogetexamaccommoda8onsisreallycomplicatedandsomanystepsthatit’sjustalmostnotworthit…”
(Nirmal,2015)
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“I’mabletoconnectwithpeopleonlinebecausethere’snobarrier…ittakesoutmylimita8ons,Icantalkwiththemforeverbutatthesame8meyou’remissingsomething…peoplewantthatphysicalthingandyoudon’tgetthatonline.Buts8ll…Icangotosomeoneonlineandsay:Helpmeplease,I’msuffering.Andthey’llsay:OkI’llhelpyou,I’llbehereforyou.Andtheycanlistentoyoucryandallthat.”
(Nirmal,2015)
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Theme3:ManagingAu6smSpectrumDisorderandRelatedSymptoms
• ManagingASDSymptoms• ManagingRelatedSymptoms
(Nirmal,2015)
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“Iwasmakingli<legainsinbothacademicandinpersonaldevelopment,andhavingterriblemoodswingsallthewhile.AnditgottothepointthisyearwhereIwasgoing:Idon’tdeservetogothroughlifeha8ngmyselfandwan8ngtodie.Idon’tdeservetoputmyselfthroughagonyinordertotryandreachmygoals.Idon’tdeservethepainIputmyselfthroughandhowhardIamonmyself…whichissortofwhyI’mtakingabreak[fromschool].”
(Nirmal,2015)
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“…asanAspie,Ihaveaverysensi8venoise,IsmellthingsveryeasilyandIhearthingsverysharplysopartyingmaynotbethebestchoicebutthat’swhereyoumeetpeople…”“…whenIsmellthingsit’slikemagnified.Icantracethingsbacktotheirsourcewiththeirsmellsome8mes…likepeoplewouldalwayssmokebelowthebuildingfloor[indorms]andIwouldsmellitinmyroomandIwouldgolike:Ugh,ohman!AndwhenIsmellcigar-studentswho’vejustfinishedsmoking…inclassIgolike:ahhhquiteoverwhelming.”
(Nirmal,2015)
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Theme4:ReferencetoorInfluenceofPastExperiences
• Previousexperiencesinelementaryorsecondaryschool
• Challengeswithsocializa6on,academicfunc6oning,andmanagingcomorbidsymptoms
• Experiencesthathaveshapedcurrentexperiences,bothposi6velyandnega6vely
(Nirmal,2015)
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“I’vekindofbeenfigh8ngmyowndemonsthroughoutmiddleschoolandearlyhighschool.Itwasn’tun8laroundmygradeelevenyearthatIreallycameoutofmyshellandstartedmakingfriends,andit’saba<le.I’mbasicallyfigh8ngmyinnerdemonsatall8mes,tryingtoworksocially…it’slearned…justnotsomethingIwasgoodatasakideven.AndsotobeabletomakefriendsandgettoknowpeopleissomethingI’vehadtolearnmyselfatadifferentratethaneverybodyelse.”
(Nirmal,2015)
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Theme5:HavingaSenseofApprecia6on
• SocialApprecia6on• AcademicApprecia6on“IfeelmorecomfortabletalkingtopeoplearoundherethanIdidinhighschool…Ipreferpeopleherebecausethere’sasenseofmaturityIdidn’tseeinhighschool.Andthepeopleherewanttobehere…whereinhighschoolyougotohighschoolbecauseyouhavetogotohighschoolandsoalotofpeopletherearejustunbearable.”
(Nirmal,2015)
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“…everyonetreatsyoudifferently[incollege],theytreatyoumorelikeanadultnow…lesscondescendingIwouldsay….theydon’treallytrytobabyyou…likeinhighschoolwheretheykindoftreatyouasifyou’rebelowthem...”
(Nirmal,2015)
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Theme6:UnderstandingAu6smSpectrumDisorderbyOthersandSelf“Igetanxious…Iambadsocially…alotofpeopledon’tunderstand…becauseI’mar8culate,peoplethinkthatIshouldbefinesociallyandthere’snothingoutwardlywrongwithme.IgettreatedasifIshouldknowwhatI’vedonewronginsteadof:No,IactuallyhavenoideawhatIdidwrong.”
(Nirmal,2015)
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“Iseemveryhighfunc8oningandforalotofpeopleIdon’tseemlikeanAspie.Sooneoftheproblemswithbeingwelladaptedis:upsideyoudon’thavealotofproblems;downside,nobodyrecognizesitaseasilyanditmaybeabithardtoconvincesomepeoplethatyoumadeneedthehelp.”
(Nirmal,2015)
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“…Iguessit’stheimpostersyndrome.You’resogoodatmimickingotherpeople…thatyoufeellike:wellmaybeIdon’thaveAsperger’s,maybeallthetestsarewrongandmaybeIdon’thavethiscondi8onwhereIneedspecialaccommoda8onsbecause…somepartofmefeelslikealltheseotherpeople,Icanrelatetothem.”
(Nirmal,2015)
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Theme7:ManagingtheTransi6on• ManagingtheTransi6onfromHighSchool• Naviga6ngaNewEduca6onalSystem“Ifeltlikegoingtocollegewouldbeabe<erstepupformethanjustgoingstraighttouniversity…Ifeltmorecomfortablegoingthroughmoreone-on-onestuffwhereyoube<erknowyourinstructors…sosmallerclasssizesmakesitfeelabitmore…isabe<erstepupfromhighschool…” (Nirmal,2015)
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“Realizingthatthisonedude[disabilityadvisor]hasliketwohundredstudentsorsoinhiscasefile.Andrealizingthatitwasn’tgoingtobelikehighschool,Iwasn’tgoingtobeassignedateachingassistant.Iwasn’tgoingtohavesomeoneIcouldconfideinandwhocouldgivethelessonbacktomeone-on-one.”
(Nirmal,2015)
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“OnethingIregre<edwhenIfirstcameherethatIdidn’tgettoknowdisabilityservicesali<lesooner,like,aZerIregistered,Igottoknowthem.And…itturnsoutIhadanoutdatedpsychoeduca8onalassessmentthatwasfrom2007.Buttheyweres8llwillingtogivemebasicaccommoda8ons.”
(Nirmal,2015)
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Theme8:EnteringaNewSocialWorld
• DesireandUncertainty• DifficultyIni6a6ngSocialInterac6on• FollowingaSocialTemplate• FindingSocialOutlets“It’soneofthosesortsofthingswhereyoualmostjustpoke,poke,poke:didyougetagoodreac8on?Didyougetnoreac8on?Andifyou’reshy,noreac8onmeans:Oh,theydon’tlikeme,I’lljustgooverhere.”
(Nirmal,2015)
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“Aspieslearnaboutpeople,learnhowtosocializeinsteadofjusthavingit…oZenwhenI’mtalkingtopeople…Iaskmyself,whataretheyexpec8ng?WhatamIexpec8ng?What’sthebestthingforthis…what’sthebestthingtosaytogetthisreac8on?So,it’svery,almostamathema8calwaytosocialize.”
(Nirmal,2015)
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“Ididn’trelate,Ididn’tgettochoosewhoIroomedwith.Twoguyswerebrothers,golfersfromNovaSco8a,majoringinBusinessandEconomics,respec8vely…wemightaswellhavebeenfromdifferentplanets.TheonlythingwehadincommonwasthatoneguyreallylikedGladiator[themovie].”
(Nirmal,2015)
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“Iftherewaslikesomekindofacluborsomething,youknow…aneasierwaytomeetpeople.Atleastwherepeoplewouldhavesomekindofsharedcommonground.Thatmakesiteasierbecausethen…[I]canhaveaconversa8onaboutsuchandsuchandIcanbranchintootherthings”
(Nirmal,2015)
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Contribu6onsoftheStudy
• Findingshavefilledasignificantgapintheliterature
• Confirmsourunderstandingbasedontheore6calchallengesdocumentedintheliterature
• Addsandexpandsourunderstandingofthephenomenon
(Nirmal,2015)
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StrengthsandLimita6ons
• Malesweredispropor6onallyrepresentedinthisstudy
• Sixofthepar6cipantshadjustcompletedyear1ofcollegeoruniversity
• Studymayrepresentasub-groupofstudentswithHFA
Strengths• ProvidedtheopportunityforstudentswithHFAtolendtheirvoiceandsharetheirstories
(Nirmal,2015)
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Strengths
• Par6cipantsrepresented5postsecondaryins6tu6ons
• Par6cipantshadconfirmeddiagnosesofeitherHFAorAsperger’sDisorder
• Thestudywassubjectedtoconsiderablescien6ficrigour
• Thefocusonbreadthanddepthofexperiences
(Nirmal,2015)
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Implica6ons:Wheredowegofromhere?
• Interven6onandplanninginhighschool• Postsecondaryprogrammingandsupport(e.g.,mentorshipprograms,disabilityawareness)
• Psychologistsworkinginsecondaryandpost-secondarysetngs
• Policydevelopment
(Nirmal,2015)
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Recommenda6onsforFutureResearch
• Execu6vefunc6oningdeficitsincollegeoruniversitystudentswithHFA
• Mentalhealthfunc6oningofpostsecondarystudentswithHFA
• Experiencesof4thyearstudentsandgraduatestudents
• Experiencesofpostsecondaryeducators(e.g.,disabilityadvisors,counselors,professors)
(Nirmal,2015)
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“ThankyoufordoingthisresearchbecausetheyforgetaboutusaZerhighschool” -Zach(par8cipant)
(Nirmal,2015)
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ThankYou
ContactInforma6onRashmeenNirmal,Ph.D.
[email protected] @gmail.com
(Nirmal,2015)