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In their own words: The experiences of students with high-func6oning au6sm/Asperger’s disorder a<ending college or university Rashmeen Nirmal, Ph.D. Sunny Hill Health Centre for Children Bri6sh Columbia Children’s Hospital November 17, 2015 (Nirmal, 2015)
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In their own words: The experiences of students with high …circa-educ.sites.olt.ubc.ca/files/2014/02/CIRCA-2015... · 2015-11-18 · In their own words: The experiences of students

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Page 1: In their own words: The experiences of students with high …circa-educ.sites.olt.ubc.ca/files/2014/02/CIRCA-2015... · 2015-11-18 · In their own words: The experiences of students

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)