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Autism (2018)
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THEPREVALENCEOFAUTISTICTRAITSINAHOMELESSPOPULATION
AlasdairChurchard,MoragRyder,AndrewGreenhill,WilliamMandy
ABSTRACT
Anecdotalevidencesuggeststhatautisticpeopleexperienceanelevatedriskofhomelessness,
butsystematicempiricalresearchonthistopicislacking.Asasteptowardsfillingthisgapin
knowledge,weconductedapreliminaryinvestigationoftheprevalenceofDSM-5autism
symptomsinagroupoflong-termhomelesspeople.Theentirecaseload(N=106)ofaUK
homelessoutreachteamwasscreened(excludingindividualsbornoutsideoftheUKorRepublic
ofIreland)usinganin-depth,semi-structuredinterviewwithkeyworkers,basedonDSM-5
diagnosticcriteria.Thisshowedadequateinter-raterreliability,aswellasevidenceofcriterion
andconstructvalidity.Ofthesample,13people(12.3%,95%CI[7.0,20.4])screenedpositive,
meetingDSM-5autismcriteriabykeyworkerreport.Afurtherninepeople(8.5%,95%CI[4.5,
15.3])were‘marginal’,havingautistictraitsthatwerenotquitesufficienttomeetDSM-5
criteria.Thosewithelevatedautistictraits,comparedtothosewithout,tendedtobemore
sociallyisolated,andlesslikelytousesubstances.Thisstudyhasprovidedinitialevidencethat
autistictraitsareover-representedamonghomelesspeople;andthatautistichomelesspeople
mayshowadistinctpatternofcharacteristicsandneeds.Furtherinvestigationisrequiredto
buildupontheseprovisionalfindings.
Keywords:autism;homelessness;adults
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THEPREVALENCEOFAUTISTICTRAITSINAHOMELESSPOPULATION
Autismisaneurodevelopmentalconditioncharacterisedbydifficultieswithsocialrelating,social
communication,flexibilityandsensoryprocessing(AmericanPsychiatricAssociation[APA],
2013)1.Itoccursinapproximatelyonepercentofthepopulation,andpersistsacrossthelifespan
(Brughaetal.,2016).Autismisadimensionalcondition,representingoneendofacontinuumof
traitsthatextendsthroughoutthegeneralpopulation(Robinsonetal.,2017).Arealistic
understandingofautismshouldnotonlyfocusonthedifficultiesarisingfromthecondition,but
mustalsoincludeconsiderationofthestrengthsofautisticpeople.Forexample,themajorityof
autisticpeoplediagnosedaccordingtocurrentconventionshavefluentlanguageandanIQin
thenormalrange(Loomesetal.,2017;CentresforDiseaseControl,2014).Furthermore,many
havecapacitiesthatstemdirectlyfromtheirautism(e.g.,Howlinetal.,2009;Meilleur,Jelenic&
Mottron,2015;Soulières,Dawson,Gernsbacher&Mottrom,2011).
Despitetheirautism-relatedstrengths,andthefactthatmanyautisticpeopleleadsatisfying
adultlives,undercurrentsystemsofcarepeopleontheautismspectrumareathighriskofpoor
adultoutcomes(Howlin&Moss,2012).Theseincludesocialisolation,educationaland
occupationalunder-attainment,difficultyestablishingindependentliving,poorqualityoflife
andincreasedriskofanearlydeath(Brughaetal.,2011;Howlin&Moss,2012;vanHeijst&
Guerts,2015;Schendeletal.,2016).Inthecurrentstudyweseektoinvestigatethelink
betweenautismandadifferentadultoutcome,namelyhomelessness.Thishasreceivedvery
limitedattentionintheempiricalliteraturetodate,andmaywellrepresentanimportantpartof
thepictureofadultoutcomesofautisticpeople.
1Inthispaper,weusetheterm‘autism’asadirectsynonymfortheDSM-5diagnosticentityof
‘autismspectrumdisorder’(ASD).WehavechosennottousethetermASD,aswedonotaccept
theassumptionitconveys,thatautismisinherentlyastateofmentaldisorder.
Autism (2018)
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Homelessnessisanumbrellatermwhichcoversarangeofdifferentsituations.Itreferstorough
sleepers,thatispeoplewhosleeporbeddownintheopenair,orinbuildingsorotherplaces
notintendedforhumanhabitation(Crisis,2017).Italsoincludespeoplewhodosleepinaplace
designedforhabitation,butwhodonothaveanylegaltitletotheiraccommodationoraccessto
anyprivatespacesfortheirsocialrelations(Fazeletal.,2014).Homelessnessbotharisesfrom
andcontributestovulnerability:ithasseverenegativeeffectsonphysicalandmentalhealth
(Fazeletal.,2014).Ifautisticpeoplearemorelikelytobecomehomeless,itisimportantto
documentthissothatapotentialsubsetofthehomelesspopulationcanbeidentifiedand
appropriateresourcesextendedtothem.Thiswouldalsohelpwiththedevelopmentof
targetedmeasurestohelppreventautisticpeoplebecominghomelessinthefirstplace.
Thecurrentstudyaimstoexploretherelationshipbetweenautismandhomelessness,by
makinganinitialestimateoftheprevalenceofautistictraitsinahomelesspopulation.Thiswork
wasinitiallymotivatedbyanecdotalreportsfromautismcliniciansandkeyworkersina
homelesssupportservicethatratesofautismmaybeelevatedinthispopulation(e.g.,Homeless
Link,2015).Inlinewiththis,thereisindirectempiricalevidencetosupporttheideathatautism
isariskfactorforhomelessness.Autisticadults,comparedtothosewithoutautism,experience
elevatedratesofmentalhealthproblems,greaterdifficultiesattainingindependentliving
conditions,lowereducationalandoccupationalattainment,andahigherriskofsocialisolation
(e.g.,Howlin&Moss,2012;Magiati,Tay&Howlin,2014).Allofthesecharacteristicsareknown
riskfactorsforhomelessness(Fazeletal.,2008,2014).
Weknowofnostudiespublishedinpeer-reviewedjournalstestingdirectlywhetherautism
predisposespeopletohomelessness.However,therearetwostudiesinthe‘greyliterature’
(i.e.,notpublishedinpeer-reviewedacademicjournals)thatsupportthisidea.Inonesmall-
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scaleinternalauditinaUKNationalHealthServicesetting,apsychiatristinvestigatedthe
presenceofautisminagroupof14homelessmenwithsocialdifficulties(NHSDevon,2011).
Sevenmembersofthispreselectedgroupwerejudgedtohaveshownstrongsignsofautism,
basedonanon-standardizedbutthoroughassessmentinvolvinginterviewswith12ofthe14
homelessindividuals,interviewswithworkers,andalsoreviewingcasenotes.Inanotherstudy,
theNationalAutisticSocietyinWalessurveyed415autisticadultsandfamilymembersof
peoplewithautism.Twelvepercentoftheseautisticadultsreportedhavingbeenhomelessat
leastoncesinceleavingschool(Evans,2011).Thesefindingsarebasedonsuboptimalmethods
ofsamplingandmeasurementandhavenotbeensubjectedtopeerreview,andsomustbe
treatedcautiously.Nevertheless,theysuggestthevalueofamoresystematicinvestigationof
thelinkbetweenautismandhomelessness.
Thetaskofassessingratesofautisminahomelesspopulationisdifficult.Diagnosingautismin
adultsisinitselfchallenging(LaiandBaron-Cohen,2015),andhomelessnesscomplicates
assessmentfurther.Theidealprocessofassessingautisminadultsinvolvescombiningthe
resultsfromstandardisedself-report,directobservationandinformantreportmeasurestogain
apictureofcurrentbehaviouranddevelopmentalhistory(NICE,2012).Thisintensiveprocess
requiresahighdegreeofengagementfromthepersonbeingassessed,andfromsomeonewho
knewthemasachild.Difficultieswithengagementareubiquitousinworkwithhomelesspeople
(KrydaandCompton,2009;Olivetetal.,2010)andgaininganykindofhistorycanbeextremely
difficultinthisgroup,astheyhaveoftenlostcontactwithfamilyandfriends(Roll,Toro,and
Ortola,1999).Otherfactorssuchashighratesofsubstancemisuse,mentalhealthproblems,
andadisjointedsocialenvironmentallalsocomplicatetheprocessofassessment(Fazeletal.,
2014).Furthermore,therearenoautismmeasuresthathavebeenvalidatedforusewith
homelesspeople(Sappok,Heinrich,andUnderwood,2015).
Autism (2018)
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Reflectingthechallengesofassessingautisminhomelesspeople,ourworkhasthefollowing
features.First,wedirectlyacknowledgethatweareunabletoofferdefinitivediagnosesof
autisminthecurrentstudy.Insteadweseektoderiveaninitialestimateofautistictraits,
includingthoseofsufficientqualityandquantitytobesuggestiveofaDSM-5diagnosis.Second,
insteadofusingself-reportand/ordirectobservation,wechosetomeasureautistictraitsby
informantreport,withtheinformantsbeingkeyworkersinahomelesssupportservice.These
arestaffmemberswhoworkdirectlywithhomelessadultstohelpthemmakepositivechanges,
andalsocoordinatetheircontactwithdiverseservices.Inthisrolekeyworkersworkwiththeir
homelessclientsoverasustainedperiodoftimeandgenerallyknowthemwell.Ourdecisionto
useinformantreportwasinresponsetothelikelihoodthatalargeproportionofthehomeless
populationwesampledwouldnotengagewithresearch.Thosewithautisticsocial
communicationdifficultieswouldlikelybeamongtheleastlikelytoparticipate,whichwould
introduceabiasintoanyestimateofprevalence.Asimilarinformant-reportapproachwas
adoptedbyFraserandcolleagues(2012)withanotherhard-to-engagepopulation,whenthey
estimatedautismprevalenceamongstpatientsinyouthmentalhealthservicesbyinterviewing
theirkeyclinicians.Whilstweacknowledgethatthisapproachdoesnotofferagold-standard
autismassessment,itdoesallowustoinvestigatethefullcaseloadofahomelessservice,
therebylimitingsamplingbias.
Athirdkeyfeatureofthisstudyisthat,giventhelackofrelevantmeasuresvalidatedfor
homelesspeople,wecollecteddatausinganin-depthinterview,structuredaccordingtothe
DSM-5descriptionofautismspectrumdisorder.Anymeasureshouldpossessreliabilityand
validity(Streiner,Norman&Cairney,2015).Weassessedtheinter-raterreliabilitybyblind
double-codingarandomselectionofinterviews.Criterionvalidityistheextenttowhicha
measureco-varieswithanothermeasureofthesameconstruct.Inthisstudy,weadministered
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themostappropriateextantautismmeasureforkeyworkerassessmentofautistictraits,the
AutismSpectrumDisorderinAdultsScreeningQuestionnaire(Nylander&Gillberg,2001);and
checkedhowthiscorrelatedwithoutcomesfromoursemi-structuredDSM-5interview.
Constructvalidityistheextenttowhichaninstrumentshowsthepatternofassociationwith
othermeasuresthatwouldbepredictedbasedonwhatweknowabouttheconstructbeing
measured(Barker&Pistrang,2015).Wemadethreeaprioriconstructvalidityhypotheses.First,
sinceautismisassociatedwithhigherriskofsocialisolation(Grayetal.,2014),wepredicted
thatiftheinterviewpossessesvalidity,thosewithhighautismtraitscoresshouldshowelevated
levelsofsocialisolation.Second,wepredictedthathighautismtraitscoreswouldbeassociated
withlowerlevelsofsubstanceabuseinthehomelesspopulation.Thiswasbasedonreports
fromhomelessnessexpertsweconsultedthat,comparedtothenon-autistichomeless
population,theirautistichomelessclientsarelesslikelytoabusesubstances.Insupportofthis
isthemeta-analyticfindingthatratesofdrugdependence(24.4%,95%CI[13.2-35.6])and
alcoholdependence(37.9%,95%CI[27.8,48.0])areveryhighinthegeneralhomeless
population(Fazeletal.,2008).Bycontrast,suchproblemsaremuchlesscommonamongst
autisticadults,asshownbyarecentwhole-populationstudythatfound3.4%oftheirautistic
participantshadsubstance-userelatedproblems(Butwickaetal,2017).Ourthirdconstruct
validityhypothesisconcernednon-autisticpsychopathology.Mentalhealthproblemsarevery
commonamongsthomelesspeople,andsuchdifficultiescouldartificiallyinflatescoresonany
measureofautistictraits.Forexample,ifapersonissociallywithdrawnduetopsychosisor
socialanxiety,thiscouldmistakenlybetakenasasymptomofautisticsocialimpairment.
Therefore,wereasonedthatifourinstrumenthasconstructvalidity,itwillnotbestrongly
associatedwithnon-autisticmentalhealthdifficultiesinthehomelesspopulation.
Autism (2018)
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Insummary,ouroverallaimistoderiveaninitialestimateoftheprevalenceofautistictraitsina
homelesspopulationusinginformantreports.Tothisendwesoughttoaddressthefollowing
questions:
1. DoestheDSM-5keyworkerinterviewthatweusedtoevaluateautistictraitsshowinter-
raterreliability?
2. DoestheDSM-5interviewshowcriterionvalidity,asindicatedbyagreementwith
anotherprofessional-reportmeasureofautistictraits?
3. DoestheDSM-5keyworkerinterviewshowconstructvalidity,asindicatedbythosewith
higherautistictraitscores,comparedtothosewithlowerautistictraitscores,being
moresociallyisolated,lesslikelytoabusesubstances,andhavingequivalentlevelsof
mentalhealthdifficulties?
4. Whatproportionofthecaseloadofalong-termhomelessservicehaveelevatedlevelsof
informant-reportedautistictraits,consistentwithaDSM-5diagnosisofautism?
METHODS
Procedure
ThestudywasbasedinahomelessnessoutreachteaminanurbanareaintheUK.Inthisteam,
eachhomelesspersonhasakeyworker,amemberofstaffwhocoordinatestheircontactwith
servicesandworksdirectlywiththemoverasustainedperiodoftime.Atthestartofthis
project,theresearchteamprovidedanautismtrainingworkshopforthekeyworkerstoimprove
thequalityofreporting;toreducebiasesthatcouldarisefromvariationsinkeyworkers’autism
knowledge;andtoengagethekeyworkersintheproject.Thistrainingworkshopincludeda
presentationandstructuredcasediscussionfacilitatedbytheresearchteam,andlastedtwoand
ahalfhours.Subsequently,allkeyworkersagreedtoparticipate.Thisinvolvedthemcompleting
aseparateinterviewforeachoftheirhomelessclients.Theonlyhomelessclientswhowerenot
Autism (2018)
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thefocusofaninterviewwerethosebornoutsideoftheUKandtheRepublicofIreland.We
suspectthathomelessnessforthosebornoutsidetheUKandIreland,includingrefugees,isa
distinctphenomenon,intermsofitscausesandcharacteristics(Fitzpatrick,Johnsen,and
Bramley,2012;Phillips,2006).
ThisstudyreceivedethicalapprovalfromtheUniversityCollegeLondonResearchEthics
Committee,reference8359/001.Allkeyworkerswereprovidedwithaninformationsheetand
consentform.Wefollowedprocedurestoprotecttheprivacyandconfidentialityofthe
homelesspeoplewhowerethefocusoftheresearchinterviews.Thehomelesspeoplewerenot
identifiabletotheresearchteam:wewerenottoldnamesoranyotheridentifyinginformation
suchasdateofbirth.
Thejointfirstauthorsconductedtheinterviews.Atthetimeoftheresearchtheywereclinical
psychologytraineesworkingaspsychologistsintheUKNationalHealthServiceandstudyingfor
theirdoctorateinclinicalpsychology.Thisroleinvolvesextensivegeneraltrainingon
assessment,andtheyalsoreceivedspecialisttraininginautismfromthethirdandfourth
authors(bothexperiencedinthediagnosisofautism),whichincludedfeedbackonpilot
interviewstheyhadcarriedout.
Participants
Ninekeyworkerstookpartinthestudy,ofwhomsixwerefemale.Keyworkerswereaged
between36and57yearsold(averageage=42.6years,SD=6.4).Theamountoftimetheyhad
workedinhomelessnessservicesrangedfrom6-26years(average=15.0years,SD=7.3).The
amountoftimetheyhadworkedintheircurrentrolerangedfrom2.5-8years,withtheaverage
being3.8years(SD=2.0).Keyworkershad,onaverage,11.8(SD=4.5)caseseach.Theamountof
timeclientshadbeenknownbytheirkeyworkersrangedfrom0-19years,withtheaverage
Autism (2018)
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being2.9years(SD=3.5).Themajorityofthesample(54.1%)wereseenbykeyworkersata
minimumofonceafortnight,10.2%wereseenmonthly,andcontactwasvariableor
intermittentin34.7%ofcases.
Of137homelesspeopleonthecaseload,106werebornintheUKorRepublicofIrelandandso
werethefocusofaninterview.Ofthese,91(85.8%)weremale.Theiraverageagewas48.9
years(SD=12.7),and87.7%wereWhiteBritish.Theaveragelengthofhomelessnesswas11.7
years(SD=8.5).Themostcommonaccommodationsituationswereasfollows:46(43.4%)were
streethomeless;20(18.9%)wereinahomelesshostel;10(9.4%)wereinindependent
accommodation(e.g.,theirownaccommodationtowhichtheyhadlegaltitle);10(9.4%)werein
semi-independentaccommodation(e.g.,accommodationtheyhadlegaltitleto,butwherea
conditionofhavingtheaccommodationwasthattheyengagedwithspecifiedsupport);and9
(8.5%)wereinprison.Theremaining11(10.4%)wereeitherinemergencyaccommodation,
withfriendsandfamily,haddisappearedformorethan90days,orhadtheiraccommodation
situationlistedas‘other’.Sixty-three(59.4%)wereknowntousedrugsand/oralcohol,and34
(32.1%)hadanofficiallydiagnosedmentalhealthcondition,althoughamuchhighernumber
weresuspectedofhavingamentalhealthcondition.
Measures
DSM-5basedsemi-structuredinterview
Weusedkeyworkers’knowledgeoftheirclientstoidentifythosehomelessindividualswith
observabletraitsofautism.Todothiswecreateda‘DSM-5AutisticTraitsintheHomeless
Interview’,whichwecallthe‘DATHI’.Thisallowedustogatherin-depthinformationaboutthe
individual’spresentation.TheDATHIwasdevelopedthroughthefollowingsequentialprocess:1)
consultationwithexpertsonhomelessness,includingthosewithexperienceofworkingwith
autistichomelesspeople;2)goingthroughtheDSM-5criteriaindetailandcreatingadraft
Autism (2018)
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interview;3)consultationonthisdraftwiththelocalAdultAutismSpecialInterestGroup,which
comprisescliniciansfromseverallocaladultautismassessmentservices;4)Pilotingthemeasure
withkeyworkersfromthehomelessoutreachteam.Ateachstagetheinterviewwasadapted
basedonfeedbackreceived.
TheDATHI,whichispresentedintheonlinesupplementarymaterialsforthisarticle,wasbased
onDSM-5criteriaforautismspectrumdisorder.Ithasseparatesectionsforeachoftheseven
criteria,withgeneralquestionsfollowedbyspecificprompts.Forexample,aquestionabouteye
contact(partofDSM-5criterionA2)wasfollowedbypromptsaboutwhethereyecontactwas
absent,orwhethertheindividualhadafixedgaze.Somequestionswereadaptedtothe
homelessnesscontext,basedontheinformationgainedfromexpertsinthedevelopment
phase.AnexampleofthiswasthatonepromptinthesectionbasedonDSM-5criterionB2asks
aboutritualisedbehaviourinrelationtosleepsites.Thefocusherewasonwhethertherewere
especiallyfixedpatternsofsleepsiteselection,orifthepersonsetuptheirsleepsiteina
ritualisticfashion.
TheDATHIwasscoredbyratingwhetherautismsymptomswerepresentforeachoftheseven
DSM-5criteria.Arangeofscoringoptionswereusedtoensurethatacriterionwasonly
classifiedas‘Present’iftherewasgoodevidencethatthiswasthecase,asweexpectedthat
therewouldbeawidevarietyinpresentationsanditwouldbedifficultinsomecasestodecide
whetherornotaparticularbehaviourwasacharacteristicofautism.Theotherpotentialscoring
optionswere:‘Possiblypresent’,‘Notpresent’,‘Presentbutattributabletocauseotherthan
autism’,and‘Insufficientinformationtoclassify’.
Scoresonindividualcriteriawerecombinedtomakeanestimatedoverallclassificationforeach
homelessperson.Therewerefourpossiblesummaryoutcomes:(1)screenedpositive-high
Autism (2018)
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likelihoodofDSM-5autism;(2)marginal-mediumlikelihoodofDSM-5autism;(3)screened
negative-lowlikelihoodofDSM-5autism;(4)unclassified–insufficientinformation.Therules
toassigneachofthesesummaryoutcomesareshowninTable1.
[Table1here]
AutismSpectrumDisorderinAdultsScreeningQuestionnaire(ASDASQ)
TheASDASQisaninformant-reportautismscreeningmeasure,developedformentalhealth
clinicianstorateautisticsymptomsoftheirpatients(NylanderandGillberg,2001).Thisasks
questionsabouttheperson’scurrentpresentation,withanswersinayes/noformat.Potential
scoresrangefrom0-9,withhigherscoresindicatingahigherprobabilityofbeingautistic.Given
theprevalenceofmentalhealthconditionsamonghomelesspeople(Fazeletal.,2008)andthe
factthatitisdesignedtobecompletedbyprofessionals,weconsideredthattheASDASQwas
themostsuitableinstrumenttouseinthecurrentstudy,inordertoexplorethecriterion
validityoftheDATHI.
Additionalinformationgatheredtotestconstructvalidity
Informationonmentalhealthandsubstanceusewasgatheredviaastructuredquestionnaire
completedbykeyworkersdrawinguponclient’snotes.Ascoreof1wasgivenformentalhealth
diagnosesifclientshadoneofmoreformaldiagnoses.Substanceusewascodedseparately
whereascoreof1wasgivenfortheuseofalcoholoranyillegaldrugofanyamounttaken
weeklytomonthly.Anadditionalsemi-structuredinterviewwasusedwithkeyworkerstogather
observableinformationabouttheirclients’socialcontacts.Thesequalitativedatawerethen
quantitativelycodedusingcontentanalysis(Elo&Kyngäs,2008),withrespecttofourmain
categoriesofrelationships(partner,family,peerrelationshipsorsociallyisolated).Acodeof1
wasgivenforeachcategoryiftherewasevidenceofacurrentpartner,anypeerrelationship
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including‘drinkingbuddies’oracquaintancesknownthroughdrugtakingandanycontactwith
anyfamilyincludingbytextorphone.Ifapersonscored0onall3categoriestheyweregivena
scoreof1inthetotallyisolatedcategory.Forthiscodingprocess,inter-raterreliabilitywas
calculatedbasedonasecondrater(AC)blindcodingtwentyinterviews,whichhadoriginally
beencodedbyMR.Thisshowedhighlevelofagreementacrossthecategories;partner(κ=1,p
<.0001,CI:1,2),peerrelationships(κ=0.9,p<.0001,CI:0.72,1.62)andfamilycontact:(κ=
0.73,p=.001,CI:0.4,1.13).Wealsogatheredinformationaboutwhetheranyindividualshad
pre-existingdiagnosesofeitherautismorintellectualdisability.
Dataanalysis
Reliabilitycheckingandassigningfinalclassification
Afterclassificationsweremadebytheprimaryresearchers(ACandMR)thereliabilityofthe
DATHIwasinvestigated.Thiswasdonebyselectingallthe‘screenedpositive’and‘marginal’
cases(n=22)andarandomselectionofcasesthathad‘screenednegative’(n=16).Thedecision
toover-selectpositiveandmarginalcases,ratherthantakearandomselectionfromallcases
screened,wasmadetoprovideamorerigoroustestofthereliabilityofthemeasure.
Allwritteninformationcollectedintheassessmentwassharedwiththeraterswhowereblind
toscoresassignedintheDATHI,andtothefinalclassification.Reliabilitywascheckedforeach
ofthesevenDSM-5criteriaandfortheoverallclassificationmade,usingFleiss’skappa(Fleiss
andCohen,1973).Byconventionkappavaluesbelow.20indicatelimitedreliability,.41to.60
‘moderate’agreement,.61to.80‘substantial’agreementand.80to1‘verystrong’agreement
(Landis&Koch,1977).Thereliabilityraters(thethirdandfourthauthors)areexperiencedin
assessingautisminadultsinbothclinicalpracticeandresearch.
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Afterreliabilitycheckingwascomplete,aconsensusdecisionwasmadebythewholeresearch
teamaboutclassificationforthosecaseswheretherewasadisagreementbetweentheoriginal
classificationandthatmadebythereliabilityrater.
Examiningcriterionvalidity
Inadditiontogeneratinganoverallclassificationforeachindividual,classificationsforindividual
DSM-5criteriawereconvertedintonumericalscores.IfanitemontheDATHIscreenedpositive
(classifiedas‘Present’)itwasgivenascoreof2;ifitscreenedmarginal(classifiedas‘Possibly
present’)itwasgivenascoreof1;ifitscreenednegative(classifiedas‘Notpresent’,‘Present
butattributabletocauseotherthanautism’,or‘Insufficientinformationtoclassify’)itwasgiven
ascoreof0.ThesescoreswerethensummedtoprovideanoverallDATHIscore,aswellas
subscalescoresforDSM-5CriterionA(socialcommunication/socialreciprocity)andCriterionB
(restrictive,repetitivepatternsofbehaviour).CorrelationsbetweentheseDATHIscoresandthe
ASDASQwerecalculatedtoexaminecriterionvalidity.
Examiningconstructvalidity
TheconstructvalidityoftheDATHIwasexaminedbycomparingthoseidentifiedashaving
elevatedautistictraits(i.e.,peoplescreeningpositiveormarginalontheDATHIoverall)with
thosewithoutelevatedautistictraitsonthefollowingvariablesreportedbykeyworkers:(1)
substancemisuse;(2)mentalhealthdiagnoses;(3)socialconnectedness.Groupdifferencesfor
thesecategoricaloutcomeswereexpressedasoddsratioswith95%confidenceintervals.
AllanalyseswereconductedusingIBMSPSSStatisticsversion24.Fleiss’skappawascalculated
usingaplug-inforSPSSdownloadedfromtheIBMdeveloperWorkswebsite(IBMSPSS,2015).
RESULTS
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Figure1showstheprocessofcarryingoutinterviewsandclassification.Ithasdetailsoftotal
numbersscreened,howmanydidnotmeetinclusioncriteria,andwhenreliabilitycheckswere
carriedoutandfinalclassificationsmade.Interviewswithkeyworkerstook20-60minutesper
case,asmorecomplexcasesrequiredmorefollowupquestionsontheDATHI.
[Figure1here]
ReliabilityoftheDATHI
Inter-raterreliabilitycoefficientsareshownforeachDSM-5criterionontheDATHIinTable2.
Accordingtowidelyusedguidelinesforinterpretingkappa(LandisandKoch,1977),inter-rater
reliabilityforcriterionA1(socio-emotionalreciprocity)isinthe‘moderate’range,whilstforthe
othersixDATHIitemsitis‘substantial’.Wealsolookedatinter-rateragreementforoverall
classification,intermsofwhetherornottheDATHIidentifiedanindividualasscreeningpositive.
Fleiss’skappawas0.69,95%CI[0.37,1.0],p<.001,indicatingasubstantiallevelofagreement
betweenratersonthisoutcome(LandisandKoch,1977).
[Table2here]
CriterionvalidityoftheDATHI
TheoverallscorefromtheDATHIwassignificantlyandsubstantiallycorrelatedwiththeASDASQ
(r=.81,p=.01).TheASDASQwasalsosignificantlycorrelatedwiththeDATHIscoresforDSM-5
CriterionA(socialcommunicationandsocialreciprocity,r=.71,p=.01)andforCriterionB
(restrictiveandrepetitivebehaviours,r=.81,p=.01).
Informantreportedautistictraitsinahomelesspopulation
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Table2showstheproportionofhomelesspeoplereportedtoshowdifficultiesconsistentwith
eachDSM-5autismcriterion.ThefullrangeofanswercodesforDATHIitemswereused,butthe
‘Attributabletoothercauses’codewasappliedforonlytwohomelessindividualswhereeither
useofalcoholorapsychoticepisodeledtoaverybriefandobviousshiftintheindividual’s
presentation.Table3givesexamplesofkeyworkerobservationsthatledtoindividualsscoring
positiveforspecificDATHIitems.Insomeinstancessuperficialdetailsinthistablehavebeen
alteredtomaintaintheconfidentialityofclients.
[Table3here]
Item-levelDATHIscoreswereusedtomakeoverallclassificationsaccordingtotheapriori
algorithmdescribedinTable1.Afterthefinalclassification13ofthe106casesscreened
positive,showingsufficientkeyworker-reportedautisticsymptomstomeetDSM-5criteria.This
equatestoaprevalenceinthispopulationof12.3%,95%CI[7.0%,20.4%].Ninecaseswere
identifiedasshowingmarginalevidenceofDSM-5autism,72asnotshowinganyevidenceof
autism,and12asbeinginsufficientlywellknowntoservicestobegivenaclassification.Table4
givesbasicdemographicdetailsandlengthofhomelessnessforeachclassification.
SupplementaryTableS1showstheprofileofautisticsymptomsontheDATHIforeachindividual
whoscreenedpositiveormarginalforautismtraits.
[Table4here]
Characteristicsofhighandlowautismtraitsscorers–constructvalidityoftheDATHI
AsisshowninTable5,inlinewithourconstructvaliditypredictions,homelesspeoplewhowere
identifiedbytheDATHIashavingelevatedautistictraits(i.e.,whoscreenedpositiveormarginal)
weremoresociallyisolatedthanlowtraitscorers.Theywerelesslikelytohaveareported
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substanceabuseproblem.AutistictraitsontheDATHIwerenotassociatedwithhavinganon-
autisticmentalhealthdiagnosis.Withregardstointellectualdisability(ID),fourpeopleoutof
thetotalsamplewereknowntohaveIDdiagnoses.Oneofthesescreenedpositiveonthe
DATHI,threescreenednegative.Oneindividualwasreportedashavingapre-existingdiagnosis
ofautism,andthispersonscreenedpositiveontheDATHI.
[Table5here]
DISCUSSION
Wesoughttoinvestigateapossiblelinkbetweenautismandhomelessness,bygatheringinitial
evidenceastotheprevalenceofautistictraitsinhomelesspeople.Wedevelopedaninterview
tobeadministeredtokeyworkers,basedonDSM-5diagnosticcriteria,andusedthistoscreen
theentirecaseloadofahomelessnessserviceinalargeEnglishcity.Therewasevidencein
supportofthereliabilityandvalidityoftheDSM-5interviewwedeveloped.Accordingtoreports
ofkeyworkers,12.3%ofhomelesspeoplehadarangeofautistictraitsconsistentwithmeeting
DSM-5diagnosticcriteria.Thisissubstantiallyhigherthanthegeneralpopulationautism
prevalenceof1%(Brughaetal.,2016).Ratesofautismmaythereforeberaisedinthishomeless
population,andfurtherinvestigationiswarrantedtounderstandlinksbetweenautismand
homelessness.
ReliabilityandvalidityofDATHI
Toourknowledge,thereisnopriorresearchinpeer-reviewedjournalsonautismand
homelessness.Thislikely,inpart,reflectstheconsiderablechallengesofassessingautismin
homelessadults.Manyhomelesspeoplearereluctanttoengagewithprofessionals,reports
fromrelativesareoftenimpossibletoattain,presentationsarecomplicatedbyco-occurring
Autism (2018)
17
difficulties(e.g.,mentalhealthproblems,substancemisuse),andnohomeless-specific
measurementinstrumentshavebeenvalidated(KrydaandCompton,2009;Olivetetal.,2010;
Fazeletal.,2014;Sappoketal.,2015).Toaddresssomeofthesechallengeswecollecteddata
usingakeyworkerinterview,whichwecallthe‘DSM-5AutisticTraitsintheHomelessInterview’
(DATHI).Wechosetouseaninterview,ratherthanaquestionnaireordirectobservationtool,to
allowforin-depthconsiderationofwhetherparticularbehavioursareindicativeofautism.For
example,theback-and-forthdiscussionbetweeninterviewerandintervieweecanhelpboth
partiesreachadecisionaboutwhetheranindividual’slackofeyecontactispervasiveacross
situations,oronlyoccurswhenthatpersonisundertheinfluenceofsubstances.Ouradoption
ofakeyworkerinterviewalsoallowedustoscreenanentirecaseloadofhomelesspeopleinone
service,thusminimisingsamplingbiasandincreasingthegeneralizabilityofourfindings.This
approachwasmadepossiblebythefactthatintheservicewebasedthisstudy,itwasthenorm
forkeyworkerstohavelongstanding(mean=2.9years)relationshipswiththeirhomelessclients.
Giventhatiswasdesignedforthecurrentstudy,acrucialquestioniswhethertheDATHIis
reliableandvalid.Toinvestigatereliability,wemeasuredagreementbetweenblindedraterson
asubsampleofinterviews.Thiswasastringenttestofinter-raterreliabilityaswedeliberately
over-sampled‘marginal’cases.ForallbutoneoftheDATHI’sitems(eachofwhichcorresponds
toaDSM-5criterionforautism),inter-rateragreementwas‘substantial’,withtheotheritem
(A1-‘social-emotionalreciprocity’)showinga‘moderate’levelofagreement.Further,whenwe
consideredtheinstrument’sabilitytodistinguishbetweenthosewhoscreenedpositivefor
autismandthosewhodidnot,inter-rateragreementwas‘substantial’(Kappa=.69).These
findingssuggestthattheDATHIhasadequatereliability.
Autism (2018)
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ThecasefortheDATHI’scontentvalidityissupportedbythefactthatitwascloselybasedon
DSM-5diagnosticcriteriaforautismspectrumdisorder.Itsfacevaliditywascheckedby
receivingcommentsondraftsfromhomelessnessandautismexperts,andbypilotingthe
interviewwithkeyworkers.WehaveincludedacopyoftheDATHIinsupplementarymaterials
forthispaper,andalsopresentexamplesofbehaviourscodedinthisstudyinTable4,toallow
readerstomakeuptheirownmindsaboutcontentandfacevalidity.
Initialevidenceforcriterionvaliditycomesfromthehighlevelsofassociationwithanother
professional-reportmeasureofautismtraits,theASDASQ(Nylander&Gillberg,2001).We
acknowledgethatthisisnotanespeciallystrongtestofcriterionvalidity,astheASDASQisa
screeningmeasure,andwasdesignedforpsychiatricpopulations,nothomelesspeople.
However,asouraimwastobegintodevelopanevidencebaseinthisareaweconsideredthat
resultsfromtheASDASQwouldatleastprovidesomeinformationregardingthecriterion
validityoftheDATHI.
OnechallengetotheDATHI,andanyassessmentofautisminhomelesspeople,isthehighlevel
ofmentalhealthdifficultiesandsubstanceabuseproblemsinthispopulation.Theriskisthat
behaviours,suchassocialwithdrawaloratypicalnon-verbalbehaviour,couldbemistakenly
labelledasautisticinnature,whenreallytheyreflectamentalhealthproblemortheeffectsof
substancemisuse.ThereforeitisreassuringthatinthisstudyhigherDATHIscoreswerenot
associatedwithhigherratesofdiagnosedmentalhealthproblems.Alsotherewasaninverse
relationshipbetweenreportedsubstanceabuseandautistictraits.Thesefindingssupportthe
constructvalidityoftheDATHI.Also,ourpredictionthathomelesspeoplewithhigherDATHI
scoreswouldbeespeciallysociallyisolatedwassupportedbythedata,andthisprovidesfurther
evidencefortheinterview’sconstructvalidity(Howlin&Moss,2012).
Autism (2018)
19
Autistictraitsandhomelessnesspeople
GiventheaboveinitialevidencethattheDATHIisanadequatekeyworker-reportmeasureof
autisticsymptomsinthehomeless,ourfindingsthatautisticdifficultiesareoverrepresented
amongsthomelessadultsshouldbetakenseriously.Webelievetheyraisethefollowing
possibilitiesthatareworthyoffutureinvestigation.First,autismislikelyariskfactorfor
becominghomeless.Ourfindingshintatonemechanismthatcouldunderpinthis,sincewe
foundthatthosehomelesswithautistictraitsweremoresociallyisolated.Perhapsalackof
socialcapitalmakespeoplemorevulnerabletobecominghomelessinthefaceofotherrisk
factorssuchaspovertyandunemployment(e.g.,Calsyn&Winter,2002).Second,autistic
homelesspeoplemayhaveadistinctprofileofneedsthatimpactontheirdailylifeandchances
ofexitinghomelessness.Forexample,sensorydifficultiescouldmakeithardforsomeonetolive
inanoisyhostel;andexecutiveproblemscouldmakeatransitiontoindependent
accommodationespeciallydifficult.
Limitations
Wehavealreadydiscussedatlengththechallengesofassessingautisminhomelesspeopleand
acknowledgedthatourfindingsarepreliminary.FurthervalidationoftheDATHIwillbevaluable
sothattheinstrumentcanbeusedinfutureinvestigationsofautismandhomelessness.This
shouldinvolvetestingtheDATHIinthehomelesspopulationagainstthecriterionofclinically
diagnosedautism,basedonamulti-disciplinaryassessment(NICE,2012).Suchworkwilllaythe
groundforamorepreciseestimateofthetrueprevalenceofautismamongsthomelesspeople,
andforstudiesthatseektoidentifythecharacteristicsandneedsofautistichomelesspeople.
Therewasasizeablegroupofhomelesspeopleinthisstudywhoweresopoorlyknownto
servicesthatnodatacouldbegatheredaboutthepresenceofASCsymptoms.Theyreceivedthe
Autism (2018)
20
classification‘insufficientinformationtoclassify’.Theseindividualsingeneralactivelyavoided
contactwithkeyworkers,andwhilethiscouldhaveawidevarietyofcausesitseemsplausible
thatthiswouldbethetypeofbehaviouranautisticpersonmightdisplay.Thismaymeanthat
ourestimateofprevalenceistoolow.
Withregardstothegeneralisabilityofourfindings,weavoidedsamplingbiaswithrespectto
ourtargetpopulation,whichwasalltheUKandRepublicofIreland-bornclientsofaspecific
Englishhomelessnessservice.Nevertheless,thistargetpopulationisnotperfectly
representativeofthegeneralhomelesspopulation,sincetheycomefromaserviceforthelong-
termhomeless,whotendtohavemorecomplexpresentations(Fazeletal.,2014).Futurework
shouldinvestigateautisminmorediversehomelesspopulations.
Clinicalimplicationsandfuturedirections
Thisstudyhasprovidedinitialevidencethatratesautistictraitsareraisedinhomeless
populations.Whilethiscannotbemorethanatentativeconclusion,thiswouldbeconsistent
withthewell-evidencedpooroutcomesforadultswithASC(HowlinandMoss,2012;
Steinhausenetal.,2016).LaiandBaron-Cohen(2015)refertoa‘lostgeneration’ofadultswith
ASCwhodidnotreceiveadiagnosisbecauseoflackofknowledgeaboutthecondition,andthe
individualswehaveidentifiedmaybepartofthisgroup.
Ifautisticdifficultiesarecommonamonghomelesspopulationsthishasimportantimplications.
ManypeoplearehomelessintheUK;themostrecentestimateisthattherearealmost5000
roughsleepersatanyonepoint(MinistryofHousing,CommunitiesandLocalGovernment,
2017),andthereisamuchlargergroupofpeoplewithnostableaccommodationwhoare
termedthe‘hiddenhomeless’(Crisis,2017).Theremaythereforebeaconsiderablenumberof
Autism (2018)
21
homelessautisticadultswhoarenothavingtheirneedsmet,andwhoareinanextremely
vulnerableposition.
Someorganisationshaverecentlydevelopedwaysofsupportinghomelessautisticadults,and
theyhaveprovidedanecdotalevidenceofsuccess(e.g.,HomelessLink,2015).These
interventionshaveusedexpertisefromtheautismfieldtoinformkeyworking,andrelatively
straightforwardadaptationshavereportedlyallowedtheengagementofadultswhohad
previouslyrefusedsupport.Itwillbevaluabletomanualiseandempiricallytestsuch
interventions,tobegintobuildanevidencebaseforsupportingautistichomelesspeople.Also,
itwillbeimportanttoresearchpathwaysintohomelessnessforautisticpeople,tounderstand
themechanismsofrisk.Thiscanthenbeusedtodesignpreventativestrategiestohelpautistic
adultsavoidhomelessness.
ACKNOWLEDGEMENTS
Theauthorswishtothankalltheworkersatthehomelessserviceinwhichthisprojectwas
basedfortheirsupportandenthusiasm,andforbeingsogenerouswiththeirtimeand
expertise.
FUNDING
ThisworkwaspartlysupportedbystudentshipstoAlasdairChurchardandMoragRyderfrom
HealthEducationEngland.
Autism (2018)
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SUPPLEMENTARYMATERIALSANDACCESSINGRESEARCHMATERIALS
Themaininterview(theDATHI)usedinthisresearchhasbeenuploadedinsupplementary
materials.Otherquestionnairesusedanddatarelatingtothestudycanbeaccessedby
contactingAlasdairChurchard.
Autism (2018)
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Table1–MethodfordeterminingoverallclassificationontheDSM-5AutisticTraitsintheHomelessInterview(DATHI)Classification ScoringcriteriaScreenedpositive/present SectionA:3items=presentORatleast2items=presentAND1item=possiblypresent
ANDSectionB:Atleast2items=presentOR1item=presentANDatleast2items=possiblypresent
Screenedmarginal/possiblypresent SectionA:Atleast3items=possiblypresentANDSectionB:Atleast2items=possiblypresent
Screenednegative/notpresent Doesnotmeetcriteriafor‘Present‘or‘Possiblypresent’Screenednegative/insufficientinformationtoclassify
Clientissopoorlyknowntoservicesthatanyattempttomatchtheirbehaviourtocriteriawouldbeaguess(thissameclassificationwillbeseenonindividualitems).
Table2–ItemscoresandInter-raterreliabilityfortheDSM-5AutisticTraitsintheHomelessInterview(DATHI)Criterion Averagescore
(SD)Percentageofcasesineachclassification Fleiss’skappa
(95%CI) Present Possibly
presentNotpresent Attributableto
othercausesInsufficientinformation
A1:social-emotionalreciprocity
0.50(0.78) 17.9 14.2 55.7 0.9 11.3 0.51(0.30,0.71)
A2:nonverbalcommunication
0.48(0.73) 14.2 19.8 53.8 0.9 11.3 0.65(0.44,0.87)
A3:relationship 0.58(0.79) 18.9 19.8 48.1 0 13.2 0.62(0.40,0.84)
B1:stereotyped/repetitivebehaviours
0.33(0.66) 10.4 12.3 66.0 0 11.3 0.64(0.42,0.85)
B2:inflexibility 0.39(0.68) 11.3 16.0 57.5 1.9 13.2 0.69(0.47,0.90)
B3:fixatedinterests 0.29(0.65) 10.4 8.5 67.9 1.9 11.3 0.64(0.43,0.85)
B4:sensorydifferences 0.25(0.59) 7.5 10.4 69.8 0 12.3 0.65(0.44,0.87)
Note:Averagescorecomputedaccordingtofollowingprocedure:itemscodedas‘Present’givenascoreof2;coded‘Possiblypresent’givenascoreof1;coded‘Notpresent’,‘Presentbutattributabletocauseotherthanautism’,or‘Insufficientinformationtoclassify’givenascoreof0.
Table3–Examplesofkeyworkers’responsesscoringaspresentontheDSM-5AutisticTraitsintheHomelessInterview(DATHI)
Criterion Examplesofbehavioursconsideredconsistentwithautistictraits
A1:Deficitsinsocial-emotionalreciprocity
Manypausesinconversation,wouldnotsayhellotosomeonetheydonotknow.
Cannotsay“howareyou?”asfindsthisinsincere.One-sidedconversationsanddoesnotrespondtoasmile.
Doesnotinitiatesocialinteractionanddisplaysrigidsmilewhengreeted.Givestangentialresponsesandspeaksinstiltedsentences.
A2:Deficitsinnonverbalcommunicativebehaviorsusedforsocialinteraction
Peculiarexpressionwitheyesclosedandmouthopen,displayswhatappearstobealearntsmile.
Noeyecontact,blankfacialexpression,hastobetoldwheninteractionsarefinishedaswouldnotpickuponthisotherwise.
Difficulttotellhowtheyarefeelingfromtheirfacialexpression,doesnotuseorpickuponbodylanguage.
A3:Deficitsindeveloping,maintaining,andunderstandingrelationships
Actsthesameindifferentcontexts.Difficultiesinsocialinteractionledtoleavingaccommodation.
Nofriendshipsorinterestdisplayedinmakingfriends,actsthesametoeveryonetheymeet.
Nointerestshowninmakingfriends,smalltalk.Oftenrudeandaggressiveininteractions.
B1:Stereotypedorrepetitivemotormovements,useofobjects,orspeech
Playswithcuffsandrubslegsallthetime,movespapersrepeatedlyinandoutofenvelope.Seemslikethereisarhythmtothesebehaviours.
Repeatedlymovesarmsinaveryparticularway.Speaksinanold-fashionedway,stereotypedold-fashionedwayofsayinggoodbye.
Describedastalkinglikeacharacterfromanineteenthcenturynovel.Consistentlyusesunusualnameforpeopleinauthority.
B2:Insistenceonsameness,inflexibleadherencetoroutines,orritualizedpatternsofverbalornon-verbalbehavior
Roompreciselyorderedwithsimilaritemsplacedinrows,butextremelydirty.
Itemsorganisedinrowsinroom.Dayfollowspreciseroutineofwhentheysleep,watchTV.Alwaystakesameroutetoshopandhasrulesaboutwhereshoppingcanbeplacedinflat.
Possessionsorganisedverypreciselyonshoppingtrolley,wouldtakethisonsamerouteeachday.Whentrolleywasstolenwasdevastated.
B3:Highlyrestricted,fixatedintereststhatareabnormalinintensityorfocus
Talksalotaboutfood,verypickyaboutfoods,whenshoppingwillstareatoneproductforalongtimereadingallingredients.
Everythingtheybuyhasaparticularanimalonit.Likesonecolouragreatdeal,paintedtheirroomanintenseshadeofthiscolour.
Makeslistsofobscuremusicians,hasalargecollectionofbrokenelectronics.
B4:Hyper-orhyporeactivityto Whenfirealarmwentoff Sensitivetotextureofclothing, Oversensitivetosoundandlight,
sensoryinputorunusualinterestsinsensoryaspectsoftheenvironment
unexpectedlyseemedliketheywouldscream,alwayshascurtainsclosed,burnthandbadlybutseemedunder-reactivetopain(waitedoneweektoseektreatment).
checksbeforepurchasinganything.Attractedbyflashinglight.HasTVonveryloud,whileinhospitalwouldhaveTVscreenveryclosetoface.
doesnotlikeTVbeingleftonwhenisinofficewithkeyworker,refusedownTV.Complainsaboutnoisesotherscannothear.
Table4-DemographicdetailsandlengthofhomelessnessbyclassificationonDSM-5AutisticTraitsintheHomelessInterview(DATHI)
DATHIclassification Gender Meanage(SD) Meanlengthofhomelessnessinyears(SD)
Female Male Screenedpositive/present 2 11 53.5(14.6) 11.8(10.9)Screenedmarginal/possiblypresent 0 9 50.4(10.1) 17.8(9.9)Screenednegative/notpresent 12 60 46.8(12.4) 11.0(8.1)Screenednegative/insufficientinformationtoclassify
1 11 55.9(11.9)
11.4(6.3)
Table5–ComparisonofthecharacteristicsofcaseswithandwithoutelevatedautistictraitsontheDSM-5AutisticTraitsintheHomelessInterview(DATHI)
Noelevatedautistictraits
Elevatedautistictraits
Oddsratio Significance 95%CI
n=72 n=22 Lowerbound UpperboundSocialnetworksize
Inaromanticrelationship 18 3 0.47 0.271 0.13 1.79Friends 57 11 0.26 0.010 0.10 0.72Family 37 4 0.21 0.010 0.06 0.68
Totallyisolated 11 10 4.62 0.005 1.61 13.29Diagnosedmentalhealthcondition 26 8 1.01 0.983 0.37 2.73Drugandalcoholuse 56 12 2.92 0.037 1.07 7.98Note:Elevatedautistictraitsdefinedas‘screenedpositive’or‘marginal’ontheDATHI
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Figure1–Screening,reliabilitychecking,andclassificationprocess