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UNIVERSITYOFSOUTHAMPTON
FACULTYOFPHYSICALSCIENCES&ENGINEERING
SchoolofElectronicsandComputerScience
CulturalFactorsandUsabilityofOnlineSocialNetworksbyAdultswithAutism
SpectrumDisorder(ASD)inSaudiArabia
by
AlaaAbdulwahabMashat
ThesisforthedegreeofDoctorofPhilosophy
October2016
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UNIVERSITYOFSOUTHAMPTON
ABSTRACTFACULTYOFPHYSICALSCIENCES&ENGINEERING
ELECTRONICSANDCOMPUTERSCIENCE
DoctorofPhilosophy
CULTURALFACTORSANDUSABILITYOFONLINESOCIALNETWORKSBYADULTSWITHAUTISMSPECTRUMDISORDER(ASD)INSAUDIARABIA
byAlaaMashat
People diagnosed with Autism Spectrum Disorder (ASD) face difficulties in
everyday life with their communication and interaction skills. Previous studies
have shown that the use of technologies generally, and online social networks
specifically,couldbeusedbyindividualswithASDtohelpthembuildconnections
andmanagesomeoftheirsocialdifficulties.However,mostinterventionresearch
has involvedyoung children inWestern countries. InArab countries, individuals
ontheautismspectrumexperiencethesamedifficultiesinadditiontodealingwith
otherissues,suchasthestigmawithinsociety,alackofservices,culturalrules,and
theinabilitytobenefitsufficientlyfromexistingtechnologies,whicharedesigned
accordingtothecultureandlanguageofWesterncountries.Thisstudyfocusedon
exploringandinvestigatingtheuseofsocialmediabyhigh-functioningadultsand
adolescents with ASD in Saudi Arabia, and exploring social situations such as
family relations and friendships, considering the influence of culture and
traditional views on the usability and sociability of social media technologies.
Existingliteraturefocusingontechnologiesthathavebeenimplementedforadults
withASDand theuseof socialmedia is discussed. In addition, a Framework for
AutisticArabs’SocialCommunicationand InteractionTechnology(FAASCIT)was
identified forculturaland technological factors thatcouldhavean impacton the
useofsocialmediabyindividualswithASDinSaudiArabia,andthesefactorswere
exploredduringthestudy.Theresearchwasdescriptivequalitativeresearch,and
thedatawascollectedandanalysedqualitatively.To investigatetheuseofsocial
mediaandtodevelopandinvestigatetheFAASCITframework,first,12expertsin
thefieldofautismandthreeadultswithASDwere interviewedinthefirststage.
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Then13adultsandadolescentswithASD inSaudiArabiawere interviewed.The
onlineactivitiesandprofilesofeight individualswithASDwhowereusingsocial
medianetworksorwhostartedusingsocialmediawereobserved,withthefocus
onfiveparticipantswhoweremoreabletousesocialmediaontheirown.Theaim
of this research was to investigate how online social networksmay help adults
withASDwhohavelimitedsupport,andtoexplorewhetheronlinesocialnetworks
are helpful for managing some of their communication challenges. The main
findingsofthisresearchshowedthatindividualswithASDinSaudiArabiaenjoyed
using technologies and the Internet. In addition, socialmedia technologieswere
used by higher-functioning individuals for sharing their interests, self-
representation,leisureandalsoforcommunication;however,eachindividualhad
different preferences and different uses of the technologies. It has also been
noticedthatphotographsandvideosinsocialmediaplayedaroleinfacilitatingthe
online communication and interaction skills for the participants, and provided
themwiththeopportunitytousesocialmedia.Inaddition,theinvestigationofthe
identifiedfactorsofFAASCIT,suchInternetconnection,digital literacy,education
andsupportservices,language,socialrules,andindependence,showedthatthese
factors had an impact on the participants’ usability and accessibility of social
media,eachaccordingtotheirspecificsituation.Thesefindingshadcontributedin
adding knowledge to research regarding adults with ASD who were not given
enough attention in Saudi Arabia. In addition, this research contributed in
providing information for future researchers and technology developers by
understanding theneedsandbehavioursofArab individualswithASDregarding
socialtechnologies,whichcouldhelpinthedesignofinclusiontechnologies.
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Contents
ABSTRACT.................................................................................................................................i
Contents..................................................................................................................................iii
Listoftables.........................................................................................................................vii
Listoffigures.........................................................................................................................ix
DECLARATIONOFAUTHORSHIP....................................................................................xi
Acknowledgements...........................................................................................................xiii
ListofAcronyms..................................................................................................................xv
Chapter1Introduction........................................................................................................11.1 ResearchGap..............................................................................................................................................51.2 ResearchAims...........................................................................................................................................61.3 ResearchChallenges...............................................................................................................................81.4 ResearchQuestions.................................................................................................................................91.5 Contributions.............................................................................................................................................91.6 ThesisStructure.....................................................................................................................................12
Chapter2LiteratureReview..........................................................................................152.1 AutismSpectrumDisorder(ASD)..................................................................................................152.2 ASDinArabCountries.........................................................................................................................182.3 RelatedStudiesRegardingASDandTechnology....................................................................212.3.1 TheUseofExistingSocialNetworksforASD.......................................................................262.3.2 SpecialSocialNetworksDesignedforASD............................................................................292.3.3 TechnologiesforASDinArabCountries.................................................................................34
2.4 RelatedCulturalStudiesandSocialNetworksfornon-ASDArabs.................................352.5 UsabilityandSociability.....................................................................................................................422.5.1 RelatedAccessibilityandUsabilityTestingStudies...........................................................46
2.6 Summary...................................................................................................................................................48
Chapter3FrameworkforAutisticArabs’SocialCommunicationand
InteractionTechnology(FAASCIT)...............................................................................51
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3.1 TechnologicalFactors.........................................................................................................................573.1.1 InternetAccessandCost................................................................................................................573.1.2 TheAvailabilityofWebServices................................................................................................573.1.3 LanguageMediumofTechnology.............................................................................................593.1.4 DigitalLiteracy..................................................................................................................................593.1.5 CulturalRelatedContentinTechnologies.............................................................................62
3.2 CulturalFactors.....................................................................................................................................633.2.1 Education.............................................................................................................................................633.2.2 SpokenLanguageandAccents...................................................................................................653.2.3 SocialRules..........................................................................................................................................663.2.4 Conservatism......................................................................................................................................723.2.5 IndependenceandAutonomy......................................................................................................733.2.6 GenderDifferencesinTechnologyUsage...............................................................................743.2.7 Music......................................................................................................................................................75
3.3 Summary...................................................................................................................................................76
Chapter4ResearchMethodologyandDesign..........................................................774.1 ResearchPhilosophy...........................................................................................................................794.2 ResearchApproach..............................................................................................................................804.3 TheMethodology..................................................................................................................................814.3.1 DataCollectionMethods...............................................................................................................834.3.2 Sampling...............................................................................................................................................924.3.3 EvaluationApproach......................................................................................................................954.3.4 DataAnalysis......................................................................................................................................964.3.5 TheInclusiveDesign........................................................................................................................98
4.4 EthicalIssues...........................................................................................................................................994.4.1 EthicsCommitteeApproval..........................................................................................................994.4.2 PotentialEthicalIssues..................................................................................................................994.4.3 InformedConsentFormandInformationSheet..............................................................1004.4.4 Confidentiality.................................................................................................................................101
4.5 Summary.................................................................................................................................................101
Chapter5CollectingGeneralInformationaboutASDinSaudiArabia.........1035.1 Interviews..............................................................................................................................................1035.2 AnalysingthecollectedData..........................................................................................................1115.3 FindingsandDiscussion...................................................................................................................114
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5.3.1 InterviewswithExperts..............................................................................................................1155.3.2 InterviewswithadultswithASD.............................................................................................130
5.4 Summary.................................................................................................................................................135
Chapter6ExploringandInvestigatingtheUseofSocialMedia.......................1376.1 RecruitingParticipantsbyPersonalContact..........................................................................1376.2 RecruitingParticipants(OnlineSurvey)...................................................................................1386.2.1 SurveyQuestions............................................................................................................................1406.2.2 AnalysingtheSurvey....................................................................................................................141
6.3 ExploringandInvestigatingFAASCITFactorsAssociatedwiththeUseofSocialMedia 1446.3.1 DesigningInterviewQuestions................................................................................................1456.3.2 Procedure..........................................................................................................................................1506.3.3 AnalysingtheCollectedData....................................................................................................1546.3.4 DiscussionoftheResultsRegardingFAASCIT..................................................................161
6.4 Summary.................................................................................................................................................193
Chapter7Participants’OnlineActivities(FurtherObservation)...................1957.1 AnOverviewofParticipants’OnlineAccounts.......................................................................1987.2 Participants’OnlineActivities.......................................................................................................2037.2.1 PostingPhotostotheParticipants........................................................................................2037.2.2 Onlineactivitiesbytheparticipants.....................................................................................205
7.3 SummaryoftheUseofSocialMediaAccountsoftheParticipants...............................2067.4 OnlineSurvey(addressedtoadultswithASD)......................................................................2107.5 Summary.................................................................................................................................................210
Chapter8DiscussionoftheResearchFindings....................................................2138.1 ReportingtheFindings.....................................................................................................................2138.2 Summary.................................................................................................................................................233
Chapter9ConclusionandFutureWork...................................................................2359.1 Conclusion..............................................................................................................................................2359.2 LimitationsandFutureWork........................................................................................................240
ListofReferences............................................................................................................243
Appendices........................................................................................................................267AppendixAParticipantInformationSheet.........................................................................................267AppendixBConsentForm..........................................................................................................................271AppendixCSurveyQuestionsforRecruitingParticipants............................................................273
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AppendixDThematicAnalysis..................................................................................................................279AppendixEContentAnalysis.....................................................................................................................283AppendixFSurveyAddressedtoAdultswithASD...........................................................................303
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Listoftables Table2.1ExamplesofMeasurementsoftheCulturalDimensionsinUsingICT.....................39
Table3.1TheDesignedFrameworkforAutisticArabs’SocialCommunicationand
InteractionTechnology...........................................................................................................................54
Table4.1TheObjectivesoftheResearchQuestionsandtheDataCollectionMethods.......86
Table5.1GQMApproachforCollectingtheDataRegardingtheFactorsofFAASCIT.........104
Table5.2InterviewQuestionsAskedtotheExpertsand/orSpecialistsintheFieldof
Autism...........................................................................................................................................................106
Table5.3InterviewQuestionsAddressedtotheAdultswithASD.............................................107
Table5.4MappingInterviewQuestionstoFAASCITFactors.........................................................108
Table5.5AgeRangeandGenderatCentresinSaudiArabia..........................................................110
Table5.6ContentAnalysis:TheNumberofExpertsorParticipantsFacingIssues
RegardingTheFactors...........................................................................................................................113
Table5.7TechnologyUsedatAutismCentresinSaudiArabia.....................................................119
Table5.8NumberofAdultsServedatEachCentre............................................................................122
Table6.1TheInitialNumberofParticipantswhoAgreedtoParticipateAfterBeing
ReachedbyPersonalContact..............................................................................................................138
Table6.2Informationfromthe26CompletedForms.......................................................................141
Table6.3InformationRegardingIndividualswhoAgreedtoParticipateFromtheSurvey
..........................................................................................................................................................................142
Table6.4CaregiversSupportingtheUseofSocialNetworks........................................................144
Table6.5GQMApproachforCollectingtheDataRegardingtheFactorsofFAASCIT
(InterviewsWithAsdParticipants).................................................................................................146
Table6.6InterviewQuestionsforParticipantswithASD...............................................................149
Table6.7InterviewedParticipants’PersonalInformation.............................................................153
Table6.8ContentAnalysis:ASummaryoftheNumberofParticipantsAffectedbyEach
Factor............................................................................................................................................................158
Table6.9ContentAnalysis:TheImpactofFactorsontheUsabilityandAccessibilityof
SocialMediaTechnologiesbytheEligibleParticipants..........................................................159
Table6.10TechnologyDevicesandTheirUsagebytheParticipants........................................162
Table7.1GQMApproachforCollectingtheDataRegardingtheFactorsofFAASCIT(Online
Observation)..............................................................................................................................................196
Table7.2Participants’InstagramProfiles..............................................................................................199
Table7.3Participants’InstagramProfiles(AfterThreeMonths)................................................200
Table7.4Participants’ProfilesonOtherSocialNetworks..............................................................201
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Table7.5Participants’OtherSocialNetworkActivities(AfterThreeMonths).....................201
Table7.6SendingaPhotoofInteresttotheParticipant..................................................................204
Table7.7Sendinga“RamadanGreeting”PhotototheParticipants...........................................204
Table7.8Sendingan“EidGreeting”PhotototheParticipants.....................................................204
Table7.9ActivitiesCarriedoutbyP3,P4andPb5.............................................................................205
Table7.10ASummaryoftheMainUseofSocialMediabytheParticipants...........................207
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ListoffiguresFigure1.1ResearchScopeDiagram...........................................................................................................10
Figure1.2InclusiveDesignLog(V1-1c)3..................................................................................................12
Figure2.1MeasurementsofGeertHofstede’sCulturalDimensionsforSaudiArabia..........38
Figure2.2TheEffectofCulturalDimensionsontheMotivationandAttitudeofArabUsers
ontheUseofFacebook............................................................................................................................39
Figure3.1ArabiziTextinDifferentArabicDialects.............................................................................66
Figure3.2Left:AWomanPhotographedintheStandardVersionoftheIKEACatalogue,
Right:TheWomanisMissingfromtheSaudiVersionCatalogue.........................................70
Figure3.3Left:StarbucksOriginalLogo,Right:StarbucksLogointheHolyCitiesinSaudi
Arabia.............................................................................................................................................................70
Figure3.4StarbucksinMakkah,SaudiArabia......................................................................................71
Figure4.1ResearchMethodsforDifferentStagesoftheResearch...............................................85
Figure4.2MainComponentsandRelationshipsoftheResearch..................................................88
Figure4.3PenetrationofSocialMediaUseinSelectedArabCountriesattheBeginningof
theStudy(June2012)..............................................................................................................................90
Figure4.4Goal/Question/MetricApproach............................................................................................95
Figure4.5ResearchMethodologyDiagram.............................................................................................97
Figure4.6Addressingthe‘Explore’PhaseoftheInclusiveDesign...............................................98
Figure5.1ThematicAnalysis:CodingtheDataUndertheThemes.............................................112
Figure5.2TheFactorsExploredfromFAASCITattheFirstStage..............................................114
Figure6.1CategorisingtheCodedDatatoThemes............................................................................155
Figure6.2TheModificationoftheIdentifiedFactors.......................................................................156
Figure8.1TheRelationBetweenSomeoftheFactorsAccordingtotheGroupof
ParticipantsWhoWereUsingSocialMedia.................................................................................224
Figure8.2TheRelationBetweenSomeoftheFactorsAccordingtotheGroupof
ParticipantsWhoCouldbeAbletoUseSocialMedia...............................................................227
Figure8.3MainComponentsoftheResearchandtheImpactofCulture(Gender,Religion,
Literacy)Factors......................................................................................................................................232
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DECLARATIONOFAUTHORSHIPI,AlaaMashat
declarethatthethesisentitled
CulturalFactorsandUsabilityofOnlineSocialNetworksbyAdultswithAutismSpectrumDisorder(ASD)inSaudiArabia
andtheworkpresentedinthethesisarebothmyown,andhavebeengeneratedbymeas
theresultofmyownoriginalresearch.Iconfirmthat:
• thisworkwasdonewhollyormainlywhileincandidatureforaresearchdegreeatthis
University;
• whereanypartofthisthesishaspreviouslybeensubmittedforadegreeoranyother
qualificationatthisUniversityoranyotherinstitution,thishasbeenclearlystated;
• whereIhaveconsultedthepublishedworkofothers,thisisalwaysclearlyattributed;
• whereIhavequotedfromtheworkofothers,thesourceisalwaysgiven.Withthe
exceptionofsuchquotations,thisthesisisentirelymyownwork;
• Ihaveacknowledgedallmainsourcesofhelp;
• wherethethesisisbasedonworkdonebymyselfjointlywithothers,Ihavemade
clearexactlywhatwasdonebyothersandwhatIhavecontributedmyself;
• partsofthisworkhavebeenpublishedas:
• Papers:
o Mashat, A., Wald, M., & Parsons, S. (2016, July). Investigating the Use of SocialMedia Technologies by Adults with Autism Spectrum Disorder in Saudi Arabia.InInternational Conference on Universal Access in Human-ComputerInteraction(pp.224-236).SpringerInternationalPublishing.
o Mashat, A., Wald, M., & Parsons, S. (2015). The role of photos in social mediainteractions of adult Arabs with autism spectrum disorder.INTED2015Proceedings,2873-2879
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o Mashat,A.,Wald,M.,&Parsons, S. (2014). Improving Social andCommunicationSkills of Adult Arabs with ASD through the Use of Social Media Technologies.ComputersHelpingPeoplewithSpecialNeeds:14thInternationalConference,ICCHP2014, Paris, France, July 9-11, 2014, Proceedings, Part I (pp. 478-485). Cham:SpringerInternationalPublishing.
• Posters:
o Mashat,A.,Wald,M., Parsons, S. (2014). TheUsability andAccessibility of SocialMedia Technologies by Adult Arabs with Autism Spectrum Disorder. 7th SaudiStudentsConference,UK.
o Mashat,A.,Wald,M.,Parsons,S.(2014).TheUseofSocialMediaTechnologiesbyAdultArabswithAutismSpectrumDisorder.The2ndInternationalConferenceonInnovativeTechnologies(ITASD),Paris.
o Mashat,A.,Wald,M.,Parsons,S.(2015).ASurveyabouttheUseofSocialMediabyAdultArabswithAutismSpectrumDisorder.8thSaudiStudentsConference,UK.
Signed:………………………………………………………………………..
Date:…………………………………………………………………………….
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Acknowledgements
Firstofall,IwouldliketothankProfessorMikeWaldandProfessorSarahParsons
fortheirsupervisionandconstantsupportduringmyPhD.Theyhavebeenagreat
guidance and have provided me with useful feedback and valuable comments
throughoutthewritingofthisthesis.Iwouldalsoliketoexpressmygratitudeand
appreciationtoEADraffanforhertime,effortandusefuladvice.
A special and sincere acknowledgment goes tomy father andmymother Eman
Dahlawi, who were always there to support me during my studies, with their
encouragement and prayers. Thanks also go tomy sisters and brother, and the
peoplefrommyfamilywhohavegivenmetheirsupportandhelp.Iwouldalsolike
toexpressmythankfulnesstoDavidStolzforhissupportandencouragement.Iam
veryappreciativeofandthankful toallmyfriendswhohavesupportedmeinall
the stages during my PhD. Many thanks also to all the nice people I met in
Southamptonwhomademytimeapleasantone.
I would also like to acknowledge King Abdul Aziz University for the PhD
scholarshipandtheSaudigovernmentforthefinancialsupport.Finally,mysincere
thanksgoestoall theparticipantsandcaregiversfortakingpart inthisresearch.
Thiswouldhavenotbeenpossiblewithoutyourparticipation.
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ListofAcronyms
AAC AugmentativeandAlternativeCommunication
ACT AssistiveCommunicationTechnologies
ASD AutismSpectrumDisorder
CMC Computer-MediatedCommunication
DSM DiagnosticandStatisticalManualofMentalDisorders
FAASCIT Framework for Autistic Arab Social Communication andInteractionTechnology
HFA HighFunctioningAutism
ICT InformationandCommunicationsTechnologies
MSA ModernStandardArabic
PCP Person-CentredPlanning
SNS SocialNetworkingSites
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Chapter1Introduction
1
Chapter1
Introduction
The number of people diagnosed with various disabilities has been increasing
globally(WorldHealthOrganization,2011),particularlyAutismSpectrumDisorder
(ASD), which is a lifelong developmental disability. Since the early 1990s, the
percentage of people diagnosed with ASD has risen, according to different
worldwidestudies(Wing&Potter,2002).IntheUK,astudybyBairdetal.(2006)
measuredtheprevalenceofASDtoapproximately1childinevery86.IntheUnited
Statesthenumberhasgrownfrom1in2,500in1966toapproximately1in150in
2000,reachingthelevelof1inevery68childrenin2010(Burke,Kraut,Williams,
&Acm,2010;Wingateetal.,2014).However,thislargeincreaseinnumbersdoes
not necessarily mean that the rate of ASD is increasing among young people;
rather, it could be that ASD has been detected more frequently as a result of
improved awareness and the availability of more developed services and
diagnosticfeatures(Wingateetal.,2014).Ithasalsobeennotedthatthenumber
of males diagnosed with autism is much higher than the number of females
(Wingateetal.,2014).Inanumberofdevelopedcountries,theprevalenceofASD
isamajorconcern. However, inothercountries,suchasnon-Westerncountries,
thenumberofstudiesaddressingtheprevalenceofASDislimited,andmostofthe
research has been undertaken in the USA, European countries orwealthy Asian
countriessuchasJapan(Samadi&McConkey,2011).Inregardtotheprevalenceof
adults with ASD, it has been estimated that approximately 4900 Canadians and
48,500 US adolescents with ASD turn 18 each year (Shattuck et al., 2012).
Additionally,astudybyBrughaetal.(2011)estimatedtherateofadultswithASD
in the UK at approximately 9.8 per 1,000 of the adult population (16 years or
older),whichissimilartotherateamongchildren(Brughaetal.,2011;Orsmond,
Shattuck,Cooper,Sterzing,&Anderson,2013).
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Chapter1Introduction
2
IndividualswithASDfacepotentialdifficultiesinarangeofsituationsintheirdaily
lives. The main difficulties, as identified by the National Autistic Society (UK)
website1, are social communication and interaction, and restricted, repetitive
patternsofbehaviour, interestsoractivities. InDSM52, themaindifficultieswere
mentionedascommunicationdeficitsandhighdependencyonroutines(American
Psychiatric Association, 2013). In the past few years, technology has been
developed and more research has been undertaken regarding ways to support
individualswithASDinmanagingtheirsocialandcommunicationdifficultiesand
improving their lives (Bolte,Golan,Goodwin,&Zwaigenbaum,2010).Theuseof
technology for helping individuals with ASD has been widely considered: for
example, Benford (2008) reported that some users with ASD prefer to interact
with technologysuchascomputersandrobotsrather thanhumansbecause they
find itsaferandmore interesting. Inaddition, theInternethasbeenshowntobe
importantforindividualswithASD.Blume(1997)reportedthattheInternetwas
consideredasacommunicationtoolforautisticindividualsjustassignlanguageis
for deaf individuals. Shpigelman and Gill (2014) argued that socialmedia could
formanalternativeenvironmentforpeoplewithintellectualdisabilities,andhelp
themtoliveinthesamewayaspeoplewhodonothavesuchdisabilities,bybeing
abletohaverelationships,receivesocialsupportandenjoyasociallife.According
toGraham(2012),socialmedianetworkssuchasFacebookwerefoundtoimprove
thesocialcommunicationofindividualswithASD.Inaddition,anumberofstudies
mention that individualswithASDaremore interested invisuals suchasphotos
andvideosthanintext(Habash,2005;Kana,Keller,Cherkassky,Minshew,&Just,
2006),whichcouldbeaninterestingmethodforindividualswithASDtousesocial
media.Meadan, Ostrosky, Triplett,Michna and Fettig (2011) also noted that the
useofvisualscouldimprovesocialinteractionforchildrenwithASD.However,the
useofphotographsisasignificantissueintheArabicculture,withdifferentviews
and arguments around it, not only regarding conservatism towardswomen, but
1www.nas.org.uk2DiagnosticandStatisticalManualofMentalDisorders(DSM)http://www.dsm5.org/about/Pages/Default.aspx
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Chapter1Introduction
3
also for religious reasons, as somepeople believe that photography is forbidden
(Larsson,2011,p.62).
However,mostoftheresearchintheASDfieldhasbeenconcernedwithchildren,
with a relatively small number of research projects having been conducted
regardingadults(Edwards,Watkins,Lotfizadeh,&Poling,2012;Hendricks,2010).
Furthermore, almost all of the research studies and innovations regarding ASD
haveemergedindevelopedcountries(Samadi&McConkey,2011),withonlyafew
studies (Al-Farsi et al., 2011; Al-Salehi, Al-Hifthy, & Ghaziuddin, 2009; Eapen,
Mabrouk, Zoubeidi, & Yunis, 2007) carried out in Arab countries. For Arab
individualswithASD,inadditiontothedifficultiesallindividualswithASDfaceas
part of the condition, Arab individuals have to navigate a large set of cultural
beliefs (Straub, Loch, & Hill, 2003). These could lead to raising obstacles when
using technologies developed in Western countries and based on the Western
socialandculturalsystem(Hill,Loch,Straub,&El-Sheshai,1998).“CS[Computer
Science]wasbornandraisedintheWesternworld,shapedbyandrespondingto
the varying needs of Western society” (Tedre, Sutinen, Kähkönen, & Kommers,
2006,p.127).Inotherwords,technologicalsystemsarecreatedandshapedbythe
values, beliefs and aesthetics of the creators according to the needs of the local
users,butproblemscouldarisewhenapplyingthetechnologyinadifferentculture
tobeusedbyuserswhohavedifferenttacitknowledgeandbackgrounds(Tedreet
al.,2006).Consequently, studies thathaveconsideredsocial skills technology for
individualswithASD inWesterncountries couldbeperceived inadifferentway
andmayhaveadifferentoutcomeandimpactifundertakenwithindividualswith
ASD in Arab countries. Cultural values could shape how users use information
technologyandshapetheiroutcomessuchasempowerment,decisionmakingand
communication(Leidner&Kayworth,2006).Itisimportanttoconsiderthepoint
ofviewofdifferentuserswithdifferentbackgroundsinordertoavoidbiasofthe
developers in the implementation of the technology (Harrison, Sengers,&Tatar,
2011).
Despitethefactthatonlinesocialnetworkingsites(SNS)havegainedwidespread
use in the Arab world (Salem, Mourtada, & Alshaer, 2013), there are still some
social rules and cultural factors which could restrict Arab online users, such as
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Chapter1Introduction
4
having relationships and the interaction between genders, in addition to other
factors such as educational systems and level of literacy (Heble, 2007). Social
mediahasprovidedArabuserswiththefreedomtoexpressthemselvesandgiven
themtheopportunitytocommunicatewithothers(“68Percent,”2010).However,
manyArabusersareawareoftheculturalrestrictionsandcanbemorealertwhen
usingtheironlinesocialaccounts.Forexample,inSaudiArabiasomefemaleusers
usenicknamesordroptheirlastname,andaddcomicorothertypesofimagesas
theirprofilephotoonFacebooktogetroundtherestrictionstheycouldface(“68
Percent,” 2010;McElroy, 2008). The use of such social networks by adultswith
ASDmayhaveadifferent implicationas individuals in thisgroup tend tobe less
awareofsocialrestrictionsandsocialcues(Bishop,2003),andyetthishasnever
beenconsideredinrelationtothedevelopmentandapplicationoftechnologiesfor
thisgroup.Inordertoimplementstudiesconsideringapplyingsocialtechnologies
for Arab users with ASD, the impact of cultural factors on their use of the
technologiesshouldbestudied.
ThisPhD research focusedon studying andexploring theuseof socialmediaby
adolescents and adults with ASD (High-Functioning or Asperger Syndrome) in
SaudiArabia,andtheroleoftechnologyintheirlives.Asthefocusisonidentifying
andexploringsomeofthedifferentcultural factorsthatcouldhavean impacton
their lives and on their use of social networks, these individuals are all being
consideredasadultsratherthanadolescentsandadults,forthesakethisstudy.As
visualstimulihavebeensuggestedtobeapreferredcommunicationmethodused
byindividualswithASD(Habash,2005;Kanaetal.,2006),theroleofphotographs
in the online communication for the participants was also considered. A
descriptivequalitativeresearchmethodologywas followed,byapplyingdifferent
qualitativeresearchmethods including, interviewswithexperts, caregiveronline
surveys,one-to-oneinterviewswiththeparticipantswithASD,observationandan
onlinesurvey targeting theparticipantswithASD.Thirteen individualswithASD
aged from 15 to 30 were reached through an online survey addressed to the
caregiversand throughpersonalcontact,andwere interviewed;however,notall
participants were considered as high-functioning, and not all were using social
media.Inaddition,onemoreparticipantwithASD(33yearsold)wasreachedvia
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Chapter1Introduction
5
the online survey, whichwas addressed to the adults with ASDwho could give
theirownconsent.Difficultiesreachingtheparticipantsandinteractingwiththem
was one of the major issues which occurred during the implementation of this
research.
This study has shown that individuals with ASD in Saudi Arabia enjoyed using
technologiesandtheInternet.Someoftheindividualswhowereconsideredhigher
functioningdesiredtheuseofsocialmedia,andwereusingdifferentsocialmedia
applications forpresenting their interests.Theiruseofsocialmedia technologies
could also be viewed as a reason for gaining the feeling of social acceptance or
satisfaction(Seiter,2015).Theuseofphotographsandvideosinsocialmediawere
beneficial in helping individuals with ASD to overcome some of their
communication difficulties, and ease their interactions with others. However,
usabilityandaccessibilityproblemslimittheiruseofsocialmediainsomecases.In
addition, thereareexampleswhereculturalaspectsof technologyuse influenced
interactionandengagement,includinghowindividualsperceiveddifferentsources
ofsupportduringtheirlives.ThelackofEnglishlanguageandlanguagedifficulties
wasamajorfactorthathadanimpactontheiruseoftechnology.
1.1 ResearchGapResearchoncognitiveimpairmentsintheArabworldisstillbehindtheaveragein
termsof international publications (Jaalouk,Okasha, Salamoun,&Karam, 2012).
Particularly,comparedtoresearch in theUSandUK, there ismuch lessresearch
into ASD in Arab countries (Al-Salehi et al., 2009; Amr, Raddad, El-Mehesh,
Mahmoud, & El-Gilany, 2011). Although several assistive communication
technologies (ACT) for different special needs have been developed in Arab
countries(HockandLafi,2011),onlyalimitednumberofstudieshavefocusedon
developing technologiesspecifically forsupporting individualswithASD inSaudi
Arabia.Rareexamples include teachingvocalisation tochildrenwithautism,and
applicationsforteachingsocialandcommunicationskills(Al-Arifi,Al-Rubaian,Al-
Ofisan, Al-Romi, & Al-Wabil, 2013; Al-Ghamdi, 2014; Al-Wabil, Al-Shabanat, Al-
Sarrani,&Al-Khonin,2010),andarediscussed further inSection2.3.3.However,
these technologies for assisting individuals with autism were designed for
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Chapter1Introduction
6
children, andpublications concerning support forArab adultswithASD through
the application of technology are almost entirely absent from the research
literature.
Research focusing on the development of technologies for individuals with ASD
and the use of technologies by individuals with ASD is important (Burke et al.,
2010).Technologiesmayalsoofferavenuesforsupportandprovideopportunities
tosupportconfidenceandwiderintegrationintosociety.However,thosewithASD
couldbemorevulnerabletobullyingandabusewhenusingtechnologythanother
individuals (Lough, Flynn, & Riby, 2014). Countering this view, Benford (2008)
focusedontechnologiesusedbyindividualswithASDandhowintegratingfamily
support can protect them from these negative behaviours. Additionally, formal
supportservicesarenotalwaysavailable foradultswithhigh-functioningautism
(HFA)orAsperger’s syndrome (Attwood,2003;Brughaet al., 2011;Burkeet al.,
2010); however, some still require support in order to obtain better social
outcomes (Burke et al., 2010). Technology has been shown to have a potential
effect on the quality of life for individualswithASD and on the improvement of
social skills in Western countries (Bolte et al., 2010) but no research has been
found on the effect of technology in improving social communication and
interactionskillsforadultswithASDinArabcountries.Focusingthisstudyonthe
useofsocialtechnologiesbyArabadultswithHFAorAsperger’ssyndromecould
help indeterminingwhat ismorecompatiblewith theirneedsandhowtheyuse
the technologies inways that are valued by them. Themain aim is to provide a
foundation upon which future research studies can build in order to enable
individualswithASDinArabcountriestobenefitfromavailabletechnologiesand
tofillthegapofthemissingformalservices.
1.2 ResearchAimsThisdoctoralresearchaddressesthesocialskillsandcommunicationtechnologies
that adult Arabs with ASD are using, and whether adults with ASD in Arab
countries are knowledgeable about using social networks, what difficulties they
face regarding culture, gender, language, religion or any other factor, and how
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Chapter1Introduction
7
existingsocialmediacanbeusedtohelp theminsocial interactions. Inaddition,
thefactthatculturalaspectsrepresentasignificantroleinthelivesofpeople,not
onlyofflinebutalsoonlinewhenusingsocialmedia,ledtodesigningaframework
identifying Arab cultural and technological factors that could affect the use of
socialmediabyArabusers.Theaimwastoexamineandtoinvestigatetheuseofa
socialmedia network by adult Arabswith ASD, evaluating their awarenesswith
regard to the identified factors,described inChapter3, andexploringhow these
factors might affect the usability of online social networks for such individuals.
However, the participants in this study were from Saudi Arabia, and the data
collectedwasaccording to thecultureofSaudiArabia.The identified framework
and the collected information could help future researchers to investigate the
differentuseof social technologiesbyotherArab individualswithASD.Thiswill
help in understanding the needs and behaviours of the Arab adults with ASD
regardingsocialtechnology,andwouldhelpinthedesignoffuturetechnologies.It
has been mentioned by Tincani, Travers and Boutot (2009) that in special
education settings it is important for researchers to understand the different
culturalfactorsofthestudentsofwhocomefromdifferentbackgrounds,andthat
teachersshouldbeabletoworkwithallthestudents.
The research also explored the participants’ online activities related to visuals
postedonsocialmedianetworksandhowtheuseofvisualssupportedadultArabs
withASD in their social interactions. In addition, this research explored towhat
extent the identified factors had an effect on the usability, sociability and
appropriateness of technologies for Arabs with ASD and their awareness of
cultural aspects in the use of online technologies. However, there could be an
argument that the cultural factors arenotonly specific toArabadultswithASD,
butcanaffecttheusabilityformostArabusers,whenitcomestosocialmedia.In
addition,itcouldbearguedthatotherfactorscouldalsoaffectadultswithASDin
general and not only Arabs. Despite these considerations, the identified factors
maybeespeciallyimportanttounderstandinthecontextofthelimitedservicesfor
adults with ASD in Saudi Arabia, and for the complexity and the restrictions of
social rules in theSaudiculture thatcouldbemoredifficult tobeunderstoodby
individualswithASD,inadditiontotheinteractionofsocialvulnerabilitycoupled
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Chapter1Introduction
8
with the social and cultural restrictions that operate for peoplewithASD in the
Saudicontext.Moreover,ithasbeensuggestedthatsomepeopleinArabcountries
are using social media to escape from and avoid the cultural and traditional
restrictions (Al Omoush, Yaseen, & Alma’Aitah, 2012),whichmade investigating
theuseof socialmediaby individualswithASD important, to findouthow they
copewiththeserestrictionsintheonlineworld,andwhatfactorscouldaffecttheir
use or present a problem for them when using social media. In addition,
understandingfactorsregardingindividualswithASDinSaudiArabiawouldhelp
inaddingknowledgetounderstandingthediversecommunityofindividualswith
ASD,andthediversecommunityofpeopleusingsocialnetworks.
1.3 ResearchChallengesFindingandreachingtheappropriateparticipantsforimplementingthestudywas
challenging,andmanydifficultieswereexperiencedincommunicatingwiththem.
The status of ASD in Arab countries is different from that inWestern countries
(Taha&Hussein,2014); it isdifficult to findadultswithhigh-functioningautism
(HFA)orAspergersyndromeforseveralreasons.Thesereasonsmay includethe
fact that their families are likely to deny their disability, feeling ashamed and
hidingthemfromthecommunity,ortherecouldbesomecasesinwhichtheyare
undiagnosed (Almasoud, 2013). In addition, people in Saudi Arabia are more
privatewhenitcomestoasensitiveareasuchasdisabilitiesorcouldfeelashamed
of thedisability so they are less likely to respond andparticipate (Al-Gain&Al-
Abdulwahab,2002).However,implementingthestudyandaskingtheparticipants
to use social media to complete specific tasks was also challenging. Not all
interviewed participants were knowledgeable enough to use social media
technologies,eventhosewhowerehighfunctioning.ItcouldbethatpeopleinArab
countries, especially adults, are less familiar with the use of technologies than
people inWesterncultures,whichcouldbea resultof low literacy rates inArab
countries(Hamdan,2005)orbecauseofthestatusofInternetdiffusionintheArab
world. This explains the effort that was exerted for the implementation of this
study.
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Chapter1Introduction
9
1.4 ResearchQuestionsFortheimplementationofthisstudy,theresearchquestionsweredeterminedas
follows:
RQ1 Whattechnological or cultural factors areimportant for the usability and
accessibility of social media technologies for adult Arabs with ASD and their
families?
RQ2In what ways can photographs and videos disseminated using social mediatechnologiessupportadultArabswithASDwithsocialskillsandfamilyrelations?
RQ3 In what ways does culture affect the usability of photographs and videos
disseminatedusingsocialmediatechnologiesforadultArabswithASD?
1.5 ContributionsThemaincontributionofthisresearchisthat it isthefirstresearchstudy,tothe
best of the author’s knowledge, investigating adult Arabs with ASD in terms of
theiruseofonlinesocialmediaandtheusabilityofsuchmediaforthisgroup.This
studyisimportantanditisasubstantialcontribution,asadultswithASDinArab
countrieshavenotreceivedsufficientattentionandthereisaconsiderablelackof
researchinthisfield.ItisanimportantstudyasthediagnosisofASDisincreasing
worldwideandexcludingindividualswithASDleadstotheirsegregation;instead
these individualsneedtobe integrated intothesocietyandtobegiventhesame
rights and opportunities as every other member of society. Therefore,
understandingmore about the specific needs and issues of Arabswith ASD is a
major research objective, not least because of the dominance of Western
perspectivesandassumptionsintheautismresearchfield.
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Chapter1Introduction
10
Figure1.1ResearchScopeDiagram
The scope of this researchwas the investigation of various intersections across
Human-Computer Interaction(computerscience,specialneeds“adultArabswith
ASD”, social science “communication”, andcultural factors);Figure1.1 illustrates
the intersectionbetween these factors. Inaddition, thisworkhas resulted in the
followingcontributions:
• Addingknowledgeregardingthestatusofservices for individualswithASDin
Saudi Arabia; the findings of interviewing the experts not only added
informationregardingadultswithASD,butalsoinformationinregardstoASD
in Saudi Arabia in general and the services, situations and difficulties that
peopleencounter.Inaddition,therehasbeenvaluableinsightsgainedintohow
the culture and the surrounding community could have an effect on the
everyday lives of people. This provides new knowledge about ASD in Saudi
Arabia and could help the responsible people to knowwhich aspects of their
servicesandsupporttheycouldimprove.
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Chapter1Introduction
11
• UnderstandingadultindividualswithASDinSaudiArabiaandwhattheydesire,
whattheyarethinkingofandwhattheywanttotelltoothers.
• Framework for Autistic Arabs’ Social Communication and Interaction
Technology (FAASCIT). This framework has been designed in this study to
investigatetheuseofsocialmediabyASDusersinSaudiArabia;however,this
frameworkcanbeadaptedandappliedindifferentcontextsondifferentgroups
ofparticipantsfromothercultureswithorwithoutASD,orwithothertypesof
special needs. It could also be applied on more female individuals in Saudi
Arabiatocollectdeeperinformationregardingthedifferentimpactofcultureon
differentgenders.Inaddition,itcanalsobeappliedto,andexploredwith,Arab
participantsfromadifferentcountryoralsofromSaudiArabiawhodonothave
ASD but are facing the same cultural restrictions. Further research of the
framework can show its effectiveness in indicating the factors that can be a
usefulforusers,designersanddeveloperswhenitcomestotechnology,andto
study the power of culture across different societies. The factors of the
frameworkcanbegeneralisedormodifiedthroughfutureresearch.
• This study is the first to examine theuseof socialmediaby adultArabswith
ASD,andinvestigatetheirawarenessoftheculturalaspectswhichareinvolved.
The study has developed an initial research strategy in the field of autism in
SaudiArabia,whichcouldbeaguideforfutureresearchersinthefield.
• A further important contribution is that this research considers the inclusive
design of products, in order to improve user experiences and the more
appropriate design of technology solutions. The inclusive design tool kit
designedbytheUniversityofCambridge,EngineeringDesignCentre3consistsof
a number of phases (Manage, Explore, Create and Evaluate), and each phase
containssomeactivities,asshowninFigure2.1.Thiscurrentresearchcovered
the activities in the Explore phase, apart from ‘Generate personas’. Further
detailsinpresentedinSection4.3.5intheMethodologyChapter.
3http://www.inclusivedesigntoolkit.com/betterdesign2/integratedtool/integratedtool.html#nogo
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Chapter1Introduction
12
Figure1.2InclusiveDesignLog(v1-1c)3
1.6 ThesisStructureChapter 2 is a literature review providing a brief background on ASD and a
comprehensivereviewofpreviousresearchregardingtechnologiesforimproving
the social skills of individualswith ASD and research in this area coveringArab
countries. The Framework for Autistic Arabs’ Social Communication and
Interaction Technology (FAASCIT), which represents the cultural factors that
might have an effect on the use of social media by this group, is presented in
Chapter3.Chapter4describesthemethodologyanddesignofthisresearchstudy.
Chapter5presentstheinterviewscarriedoutforcollectinginformationregarding
thestatusandsupportofASDandcentresofferingsupporttoindividualswithASD
andtheircarersinSaudiArabia,withexpertsinthefieldofautismandthreeadult
participantswithASD.InChapter6,theonlinesurveyforrecruitingparticipantsis
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Chapter1Introduction
13
described and its outcomes are presented, in addition to the findings of
interviewingtheadultswithASD,andexploringtheiruseofsocialmedia.Chapter
7followsupthesefindings,byreportingtheobservationsoftheonlineactivitiesof
theparticipants.Chapter8discussesthefindingsofthisPhDresearchandChapter
9 draws conclusions and suggests future research ideas to follow up this PhD
research.
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Chapter2LiteratureReview
15
Chapter2
LiteratureReview
IndividualswithASDmayrequireinterventionsandservicesnotonlyduringtheir
childhood, but also through adolescence and beyond (Shattuck et al., 2007).
IndividualswithASDfacemoredifficultiesafterleavingschool,andmoresupport
isrequired(Orsmondetal.,2013).Astheyreachanagewheresomeofthemmay
becapableof independence, theyconfrontarangeofobstacles in theireveryday
lives,suchaslowleveljobs,problemswithfriendshipsandrelationships(Howlin,
Goode,Hutton,&Rutter,2004).Ganz(2007)reportedthatthecostsofcaringfor
peoplewithautismincreaseduringadulthood;medicalcostsarealsomuchhigher
for adults than children (Buescher, Cidav, Knapp, & Mandell, 2014). Parents,
teachers, therapistsandothercaregiversmaynotalwaysbeavailable toprovide
support, so alternative support should be available to give individuals the
opportunity for independent livingand tobe included in thesociety (Hong,Kim,
Abowd,&Arriaga,2012).
Asubstantialamountofresearchhasbeenconductedontheuseoftechnologyand
itsimpactonthelivesofpeoplediagnosedwithASD.Studieshavefocusedonsuch
factorsaseducation,behaviour,socialskillsandcommunication.Inthischapter,an
overview of ASD will be presented in general and then in regards to Arab
countries. Existing studies regarding technologies for ASD are also discussed, to
clarify the advantages of the use of technology in developing social skills for
individualswithASDindevelopedcountriessuchastheUnitedStates,theUnited
Kingdom, Canada and Spain, in addition to previous research considering
technologiesthatweredevelopedforArabswithASD.
2.1 AutismSpectrumDisorder(ASD)The term ‘autism’was first used in 1911 by a Swiss psychiatrist named Eugene
Bleuler,whousedthetermtodescribeaproblemthatsomepeoplehadwithsocial
interaction (McNally, 2009). In 1943, Leo Kanner identified a new category of
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Chapter2LiteratureReview
16
autismcalled‘earlyinfantileautism’or‘Kannersyndrome’(Wing&Potter,2002).
Meanwhile,HansAspergerwasworkinginthesamefieldandpublishedhiswork
in 1944, describing a disorder similar to Kanner’s,whichwas later named after
him:Aspergersyndrome(Wing&Potter,2002).
In theDiagnosticandStatisticalManualofMentalDisorders (DSM-IV-TR), autism
spectrumdisorderwascategorisedunderpervasivedevelopmentdisorders(PDD),
andASD included three types of possible diagnoses: autism,Asperger syndrome
and pervasive development disorders—not otherwise specified (PDD-NOS)
(AmericanPsychiatricAssociation,2000).However,intheDSM5thedition(2013),
the three types were replaced with the diagnosis of autism spectrum disorder
(American Psychiatric Association, 2013). Autism spectrum disorder (ASD) is a
lifelongdevelopmentaldisabilityand individualswithASDcouldhaveadifferent
continuumofsymptoms;withsomeindividualshavingmildsymptomsandothers
severesymptoms(AmericanPsychiatricAssociation,2013).
According to themost recent version of theDiagnostic and StatisticalManual of
MentalDisorders(DSM-5),thecorediagnosticfeaturesofASDaredifficultieswith
socialcommunication,socialinteractionandsocialimagination,andalsorepetitive
behaviour(AmericanPsychiatricAssociation,2013).Incommunication,individuals
with ASD tend to have difficulty understanding facial expressions and gestures,
initiating a conversation, recognising voice tone and understanding jokes or
colloquial phrases, which could lead them to avoid social situations, causing
isolation (Bishop, 2003). Some individuals could have more serious
communication problems, such as limited or poor language abilities, and some
could have complete lack of speech and language delays (American Psychiatric
Association,2013,p.53).Inthecaseofsocialinteraction,individualswithASDtend
to struggle in friendships, do not recognise acquired social rules, may become
confused and uncomfortable in the presence of other people, exhibit a lack of
interestoract inawaythat isperceivedasstrange(Escandell-Vidal,2009;Frith,
Morton,&Leslie,1991).Inaddition,withregardtoimaginationskills,individuals
withASDoftenstruggletopredictwhatmighthappennextinagivensituation,to
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Chapter2LiteratureReview
17
anticipatelikelyoutcomesandtounderstandotherpeople’sfeelings,thoughtsand
actions(Kamp-Beckeretal.,2010).
Similarly, Macintosh and Dissanayake (2006) considered social skills and the
presenceof problembehaviour themain areas of difficulty inASD, listingunder
social skills co-operation (sharing, assisting others and complying with rules),
assertion (requesting information, introducing themselves and responding to
other behaviours), self-control (turn taking and developing compromises), and
responsibility (effectively communicating, performing household chores and
havingregard forothers’property). Inaddition,externalising (physicalorverbal
aggression, poor angermanagement or arguing), internalising (sadness, anxiety,
low self-esteem and loneliness), and hyperactivity (excessive motion,
impulsivenessordistractibility)werelistedundertheproblembehaviourdomain.
However,toimprovethequalityoflifeforindividualswithASD,itisimportantto
keep in mind that some individuals with ASD may have more sensitivity than
others towards bright lights and colours, loud sounds, strong smells and other
environmentalstimuli (Burkeetal.,2010).Moreover,asmentionedearlier ithas
beenreportedthatsomeindividualsmightprefertousevisuals,suchaspictures,
symbols or sign language, rather than speech or evenwrittenwordswhen they
needtocommunicate(Habash,2005;Kanaetal.,2006).Inaddition,Chen,Tsaiand
Wu (2005) demonstrated that the best way to achieve text comprehension
performance of the participantswith autismwas displaying text on a computer
withimages,comparedtotheothermethods,whichweretextonly,andtextwith
audio(Grynszpan,Martin,&Nadel,2008).Ithasbeenshownbydifferentstudies
thattheuseofvisualsproducedpositiveresultsforindividualswithASD,andthat
visualhavebeenusedfordifferentpurposes(Johnston,Nelson,Evans&Palazolo,
2003). For example, FPECS (Picture Exchange Communication System) iswidely
used for children with ASD, and studies have confirmed its usefulness for
prompting speech for some children with ASD (Charlop-Christy et al., 2002;
Howlin et al., 2007). Social stories4 have also been considered for teaching
4 “SocialstoriesIncludefourtosixsentencesthatdescribefactualinformationregardingasocialsituation,possiblereactionsofothersinthatsocialsituation,anddirectivestatementsofappropriateordesiredsocialresponses”(Thiemann&Goldstein,2001).
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Chapter2LiteratureReview
18
behavioural and social skills for individuals with ASD (Gray, 1995; Thiemann &
Goldstein,2001). In thestudybyThiemann&Goldstein(2001), theuseofSocial
Storiescombinedwithtextcuesandvideofeedbackshowedimprovementsinthe
social communication skills of their participants, that could help them in
communicatingwiththeirnon-ASDpeers.
Moreover, a number of studies (Copeland & Hughes, 2000; Lancioni & O’Reilly,
2002; Pierce & Schreibman, 1994) have utilised photo prompts for teaching
individuals with ASD about daily living skills, food preparation and vocational
skills in order to build independence (Van Laarhoven, Kraus, Karpman, Nizzi &
Valentino,2010).InadditiontotheuseofphotopromptsforindividualswithASD,
otherstudiesusedvideopromptsorvideomodellingforexplainingdailylifetasks
(Sigafoos et al., 2005;VanLaarhoven&VanLaarhoven-Myers, 2006). Video and
photographicpromptshaveallshownapositiveeffectontheindividualswithASD
(Alberto, Cihak & Gama, 2005; Van Laarhoven et al., 2010). Other studies used
visualsforindividualswithASDtoinitiateinteraction.AstudybyJohnston,Nelson,
Evans & Palazolo (2003) showed that using communication graphic symbols
linked to meaningful verbal short sentences has been effective for initiating
entrancetoplayingactivitiesforpreschoolchildrenwithASD.Theseare just few
examples that show the effectiveness of using visuals for people with ASD of
differentagegroups.
2.2 ASDinArabCountriesAsmentionedintheintroduction,thenumberofpeoplediagnosedwithASDinthe
United States is 1 child out of 68 (Wingate et al., 2014). In Arab countries, the
reported prevalence is also increasing; in several existing studies onASD, it has
been reported that the overall percentage of diagnosed individuals is higher in
someArabcountriesbutmuchlowerinothers.Forexample,Al-Farsietal.(2011)
reportedthat,inOman,therateofpeoplediagnosedwithASDis0.014outof100,
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Chapter2LiteratureReview
19
whereas inSaudiArabia, the results showed that the rate is0.18outof100 (Al-
Salehietal.,2009;Yazbak,2004).Inamorerecentstudy,amuchhigherdiagnosis
ratewasindicatedinSaudiArabia,oneoutof160(Cooper,2013).However,there
isa lackofstudiesreportingtheprevalenceofASDinSaudiArabia(Mohammed,
Wahass, & Mahmoud, 2016), so the exact number is not clear. In addition,
Almasoud (2013) andAlqahtani (2012) claim that it is difficult to obtain a clear
ideaabouttheexactstatisticsofpeoplewithautisminSaudiArabia,whichcould
beasaresultofpoordiagnosisservices,familydenialorfeelingsofshameabout
thedisability.Theuseofdifferentmethodologiesandclassifications,aspointedout
by Al-Farsi et al. (2011), might be the reason for the difference between Saudi
Arabia’s and Oman’s estimated rate of diagnosis. In the United Arab Emirates
(UAE),Eapenetal.(2007)conductedastudywithtwostages,thefirststagethey
used an ‘Autism Screening Questionnaire’ and they found that the average
prevalence of ASD is 0.58 out of 100; however, in the second stage, they used
‘clinical interview’ foraDSM-IVdiagnosisofPDD,and theaverageprevalenceof
PDDwasabout0.29outof100.
Although research results have generally shown that the rate of diagnosed
individuals inArabcountries is lowerthanindevelopedcountries, thereisstilla
significant difference between the rates of ASD diagnosis in different Arab
countries.Thismightbeduetodifferencesinbeliefs,customsorrelationshipsor
because of economic problems (Hussein, Taha, & Almanasef, 2011). It has been
claimedinvariousstudies(Al-Farsietal.,2011;Al-Salehietal.,2009;Amr,BuAli,
etal.,2012;Samadi&McConkey,2011)thattheassumptionofalowpercentagein
some Arab countries and other developing countries is due to the lack of
information on identifying children with ASD, under-diagnosis and under-
reporting of cases, and a number of other possible factors, such as cultural
differences, level of education and lack of services, experience and professional
training. Additionally, bothAl-Farsi et al. (2011) and Essa et al. (2012)mention
that in Arab countries there is low awareness of the prevalence of ASD and its
symptomsarenotwidelyrecognisedbythegeneralpublic.
On the other hand, although gender differences affect both Arab countries and
developedcountries(Al-Salehietal.,2009),theirinfluenceinArabcountriesmight
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Chapter2LiteratureReview
20
involve more cultural concerns. In one study it has been claimed that, in Arab
countries,thelowerrateoffemalesdiagnosedwithASDcomparedtomalesmight
bebecauseof societalpressures concerning seeking treatment,whichmakes the
femaleslessvisibletoexternalviewers(Amretal.,2011).However,thismightnot
be true, as the ageof diagnosis and symptomoccurrence is usually three to five
yearsofage(Filipeketal.,1999),andchildrenofbothgendersaretreatedequally
atthisage.Thegenderdifferenceismorelikelyduetocorecharacteristicsofthe
disorder: Fombonne (2003) reported that, globally, the percentage of males
diagnosedwithASDishigherthanthatoffemales,witharatioof4.3:1(Parketal.,
2012).
Although individualswith ASD once received less attention and less health care
services in the Arabworld (Al-Farsi et al., 2011), the situation is changing, and
supporting this group is now given greater consideration. More centres for
supportingindividualswithASDhavebeenestablishedinvariousArabcountries,
andanumberof events andworkshopshavebeenorganised to raiseawareness
(Qabbani,2011;“Raisingautism,”2008).However,itwasreportedintheAlMadina
newspaperthatfamiliesofautisticchildreninAlmadinahAlmunawarah(acityin
SaudiArabia)wereasking forcentrestobeestablishedfor individualswithASD,
and complaining about the current lackof services (Aldifyan, 2013). In addition,
quite recently therewere still problems at some centres, especially public ones,
regardinghealthcareservicesandthelimitednumberofteachers,accordingtothe
parents(Aljuhani,2013).Inaddition,itwasreportedinAlMadinanewspaperthat
acentre forautism located inMakkah,SaudiArabiahad informedtheparentsof
children aged 12 years and older that theywould not be providing services for
themstartingfromthefollowingyearandthattheywouldneedtoleavethecentre
andfindalternativesupport(AlMadina,2014).
Thisfrustratedtheparents,becausenoalternativepublicserviceswereavailable.
The decisionwasmade to avoid the integration ofmale and female children, as
stated in thereport.Thisshowsthedifficultyadultsontheautisticspectrumare
facinginseekingsupport.Notonlyisthecostofserviceshigh,butservicesarealso
verylimitedorunavailable(Aljuhani,2013;SaudiGazette,2014).
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Chapter2LiteratureReview
21
2.3 Related Studies Regarding ASD andTechnology
Itwasmentionedpreviouslythatdifficultieswithsocialskillsareoneofthemain
diagnosticfeaturesofASD(Macintosh&Dissanayake,2006;Noterdaeme,Wriedt,
&Hoehne,2010;Venkatesh,Greenhill,Phung,Adams,&Duong,2012).Individuals
withASDfinditdifficulttocommunicateandinteractwithotherpeople(Grandin
&Attwood,2012).InastudybyOrsmondetal.(2013)onyoungadultswithASDin
England, the authors found that 40% never got along with friends, 50% never
receivedanyphonecallsorwere invitedtosocialactivitiesand28%werenever
contactedandwereactuallyisolatedfromthecommunity.AsfoundbyPutnamand
Chong(2008),individualswithASDwanttoincludesocialskillsintechnologiesto
overcome their difficulties, in addition to organisational and academic skills.
Significant research efforts have focused on developing and applying various
technologiestosupportsocialandcommunicationskills for individualswithASD
(Bolteetal.,2010).
Manystrategiesandtoolshavebeendevelopedforteachingappropriaterulesand
behaviours indealingwithdifferent situations to improvequalityof life, suchas
using peer mediated-practices, social networks, robots and virtual reality
environments to improve social skills (Harper, Symon & Frea, 2008; Parsons,
Leonard & Mitchell, 2006; Porayska-Pomsta et al., 2012; Scassellati, Admoni &
Mataric,2012).Themajorityof the technologies forASDweredeveloped for the
useofchildren.Anumberofstudies,suchas(Moore&Calvert,2000)havefound
that children with ASD enjoyed working with computer technologies and
experienced better learning results. However, themain interest of this research
study was the use of the Internet and computers as assistive technologies for
supportingsocialskillsandcommunicationofadultswithASD.Ahighnumberof
adults with ASD face problems in face-to-face communications and try to avoid
socialinteractionandgroupactivities(Bishop,2003;Burkeetal.,2010).Moreover,
about 60%–75% of adults with ASD have had poor outcomes in friendships,
education, employment or independent living (Newschaffer et al., 2007; Seltzer,
Shattuck,Abbeduto,&Greenberg,2004).However,thelevelofsocialoutcomesfor
individuals with ASD is improving over time, which could be related to the
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Chapter2LiteratureReview
22
improvementsoftheservicesystemforsupportingthosewithASD(Levy&Perry,
2011). InsomeArabcountries, thissituationismoredifficult,withmorecultural
communicationrestrictions,ascommunicatingwiththeoppositegenderisalready
an issue with many people (Alsheikh, Lindley, & Rode, 2010). In addition, as
pointed out earlier, awareness of ASD in these countries is limited (Essa et al.,
2012), and families aremore likely to hide their diagnosed children to prevent
themselves from feeling shame and to protect themselves from harsh societal
judgments,whichcouldincreasethesocialisolationofindividualswithASD(Nasr,
2008).
Researchhasshownthevalueofinnovativeuseoftechnologyespeciallywhenitis
connected to the internet, in theway it can enhance communication, encourage
interactionsandpreventsocial isolation(Bolte,Golan,Goodwin,&Zwaigenbaum,
2010).Personaltherapistsandhospitalservicesareexpensiveandnotaffordable
for all people (Goodwin, 2008); additionally, medical treatments for ASD are
mostly forchildrenandmaynotbeveryeffective foradults(Brughaetal.,2011;
Burke et al., 2010). Moreover, asmentioned earlier formal government support
servicessuchasallowancesandmedical insurancecoveragedonotalwaysapply
to high-functioning individuals or people with Asperger syndrome (Attwood,
2003).Thisproblemoccursworldwide;however,thewaysofdealingwithitmight
differ between countries, and the use of assistive technologies may also be
different,dependingonvariousfactors.Someeffecthasalreadybeenshownfrom
the use of computer technologies and the Internet in helping people individuals
with ASD (Bolte et al., 2010). Nevertheless, the number of research studies on
adultswithASDisverylimitedoverall(Parsonsetal.,2009).
Burke et al. (2010) claim that the use of computer-mediated communication
(CMC),suchasemails,blogs,onlinesocialnetworksandtextmessaging,forsocial
supportisanidealmethodforindividualswithASD,becauseitprovidestheuser
with some control over the conversation as well as more processing time.
According to Benford (2008) and Hong et al. (2012), the use of the Internet
reduced the difficulty of adults with ASD in communicating and offered social
support and useful information. Computerised technologies also offer the
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Chapter2LiteratureReview
23
opportunity for the users to work at their own pace and level (Golan & Baron-
Cohen, 2006;Wainer & Ingersoll, 2011). It has also been suggested in research
studies that computers can be reassuring, controllable and adaptable by
individualswithASD (Brosnan&Gavin, 2015;Grynszpan et al., 2008).Although
theresultsofthestudybyBurkeetal.(2010),showedthatCMChelpedindividuals
withASDininitiatingsocialconversationsandinteractions,notalltheparticipants
were satisfied by the use of it. Some features of CMC might be annoying and
difficult for individuals with ASD, such as changing the subjects suddenly and
quicklyinchatrooms,knowingtheboundariesofwhototrustandtowhatextent;
missing the advantage of face-to-face feedback; and grammar and spelling
mistakes (Burke et al., 2010). In addition, users could be subjected to an
inappropriatelanguagestyle(Benford,2008),whichmightalsobedistractingand
unpleasant.
Furthermore, the use of smart phones and touchscreen devices has had a
significantimpactonawiderangeofsoftwareplatformsandinsimplifyingtheuse
ofthetechnologyandformsofcommunicationforindividualswithlimitedverbal
abilities,foralowercost(Shaneetal.,2012).Alargenumberof ‘apps’forpeople
with various special needs have been created; some sources have listed and
categorisedthem(Sailers,2010).Concerningtheselists,itisnoticeablethatmost
oftheapplicationsaredesignedforchildren,particularlyineducation,andonlya
small number of apps are aimed specifically at adults. Nevertheless, several
computer-basedtechnologieshavebeenproducedthatareappropriateforuseby
adultsandadolescentswithASD,forexample:
- increasingmotivationtolearnandmanagesocialskills(Hong,Kim,Abowd,
&Arriaga,2012),
- for communication and daily life activities such as doing the laundry,
washing,dressingorcooking(Cullen&Alber-Morgan,2015),
- virtualrealitytechnologiesaimedatenhancingsocialskills,socialcognition,
andsocialfunctioning(Kandalaft,Didehbani,Krawczyk,Allen,&Chapman,
2013),andsocialunderstanding(Mitchell,Parsons,&Leonard,2007).
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ThemaingoalofthesetechnologiesistohelpindividualswithASDlearnspecific
skills or knowledge and apply what they have learned in the real world. It is
importanttosupportindividualswithASDtobecomemoreintegratedintosociety
and not to over-rely on the technologies so that they become isolated (Bishop,
2003;Bolteetal.,2010).
Previousstudieshaveintroducedtheideaofusingvirtualreality(VR)systemsto
make it easier for people to understand and transfer newly taught social skills
from computer technologies to real-world situations (e.g. Bolte et al., 2010;
Wallace et al., 2010). A limited number of these types of systems have been
designed in the form of virtual environment systems (VEs), which are “3-D
computerised representationsof “realworld” or imaginary scenarios and canbe
designedtoallowtheuserthefreedomtonavigatethroughanenvironment(e.g.,a
house or a street) and interact with objects and people” (Wallace et al., 2010,
p.200).Forexample, in the studybyMitchell,ParsonsandLeonard (2007), aVE
system containing a café and a buswas evaluated for teaching adolescentswith
ASDsocialunderstandinganddecision-makingtechniques.Thisstudyshowedthat
theparticipants improved in judgingandreasoningaboutsomecases in thecafé
and bus scenarios when they experienced the VE system. However, it was not
possible to examine whether there was an effect on the behaviour of the
individualswithASDinreal lifesituationsaftertheirexperiencewithVEsandso
theextent towhichusing theVEwasable tosupport transferofknowledgewas
not possible to judge. Nevertheless, a review of the educational use of VR for
autism (Parsons&Cobb,2011)noted thatdifferent studies suggested that some
individuals could transfer procedural and ruled-based social skills which they
learntfromthevirtualsystemtotheirreal-worldsituations.
InthestudybyWallaceetal.(2010),immersivevirtualenvironments(IVEs)were
developed to explore the experiences of adolescents with ASD. This type of VE
allows the user to interact with the environment, which could be more
encouragingforsocialskillsdevelopmentindifferentsituations.AnIVEcalledthe
‘BlueRoom’wasdesignedtoallowuserstoenterandleavetheenvironmenteasily,
withoutanyrestrictionsofaVRheadsetorgoggles;itwasusedtotesttheabilityof
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theparticipants toacceptandbelieve thatwhat theyexperiencedmightapply in
real-world situations. Additionally, the study tested the response of participants
withASDandtheirjudgmentsofvariousscenariosindifferentscenes,suchasina
residentialstreet,aschoolplaygroundandaschoolcorridor,andcomparedtheir
responsestothoseoftypicallydevelopingpeople.Thestudyshowedthatchildren
with ASD engaged with, and became involved, in the content and felt ‘present’
within the IVE, in the same way as the typically developing children. However,
thesetechnologiesarenotreadilyavailableforpersonaluseandsotheydonotyet
represent a realistic solution for supporting social understanding (Wallace,
Parsons&Bailey,inpress).
Although individuals with ASD show improvements in interacting with familiar
peoplesuchasparentsandteachersovertime,astheygrowolder,interactingwith
peers and building friendships in general remains difficult (Orsmond, Krauss, &
Seltzer,2004;Trepagnier,Olsen,Boteler,&Bell,2011).AspointedoutbyParsons
andMitchell(2002),VEsrequirecollaborativelearningformoreefficiency,rather
than self-learning techniques, so that individuals can obtain the advantages of
social communication when interacting with their peers (Bishop, 2003). An
example of collaborative learning comes from a prototype of a virtual peer
simulation that has been invented to teach adolescents and adults with ASD
conversational skills, and to help them to improve their interaction with peers
(Trepagnieretal.,2011).Theideawastoencouragethelearnerstobeinvolvedin
an interactive, multi-turn structured conversation, allowing them to practice
interacting in various verbal and non-verbal behaviour situations with an on-
screen partner, by choosing from available response options and receiving
feedback (Trepagnier et al., 2011). Overall, the participants agreed that the
simulation partner positively helped them in conversations and that it was less
stressful than real-world conversations. A larger simulation and having a longer
conversation,withnewconversationalsubjectsandmoreresponseoptionswould
bemorehelpfulfortraininginsocialconversationalskills,inorderdeterminethe
efficiency of this method for individuals with ASD in improving real-world
interaction (Trepagnier et al., 2011). The findings fromVR systems have shown
that VEs can simulate real social situations successfully (Bolte et al., 2010;
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Georgescu,Kuzmanovic,Roth,Bente,&Vogeley,2014),althoughsuchassumptions
havealsobeenrecentlychallenged(Parsons,2016).
2.3.1 TheUseofExistingSocialNetworksforASD
Socialnetworkingsites(SNS)havebeenpopularinthepastfewyears,andalarge
number of people are connecting via these networks, with around 29% of the
world’s population active users in 2015 (Kemp, 2015). SNS such as Facebook,
TwitterandMySpace;andvideositessuchasYouTubeandblogsareallconsidered
social media sites (O’Keeffe & Clarke-Pearson, 2011). Social media technologies
can have a potential impact on people’s communication skills, socialising and
learning(Veltri&Elgarah,2009)asitisatypeofhuman-humaninteractionrather
than just a computer-human interaction (Spolsky, 2004). Online social networks
havebeen indicated as amethod forproviding social support and strengthening
the relationship with close friends (Shpigelman & Gill, 2014). It provides users
with the ability to connect and socialise without the pressure of time and
immediacy that they face in real-life social situations. It has been reported by
Scealy,PhillipsandStevenson(2002)thatonlinecommunicationprovidedpeople
whoareshy theopportunity tocommunicate,as they feelmorecomfortableand
less shy than when communicating face-to-face. Moreover, communicating via
onlinesocialmediahasbeenfoundtobebeneficialforsociallyanxiousindividuals,
providing the ability to increase the quality of friendships, enhance engagement
and decrease loneliness, which has raised the issue that social media could be
relevant and well-suited for adults with ASD as well (Brosnan & Gavin, 2015;
Mazurek,2013).Thissectionpresentsanumberofstudiesconsideringtheuseof
social networks for supporting social communication for individuals with ASD,
leavingoutotherstudiesinrelationtosupportingothertopics.
AprojectdevelopedbyAutismConnectionsEurope(ACE)tohelpadultswithASD
tomakefriends,ACEbook,aimstoenablefriendstomeetviaFacebookaccording
to a specific interest and then arrange personal meetings around Europe to
strengthen their friendships. This could help in maintaining friendships, which
individualswithASDusuallyfinddifficulttoaccomplishineverydaylife(Parsons
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et al., 2000). Results for ACEbook have indicated improvements in social and
communicationskills,independenceandmood,andinovercomingfear(“ACEbook
project,”2011). Participantsstatedthattheprojectgavethemtheopportunityto
travel to different countries and learn about different cultures. Besides all the
aforementionedadvantagesoftheproject,otherbeneficialaspectsincludetheuse
of existing technologies shared with typically developing people, enabling
individualswithASD to engagewith themmoreeasily.However, somepotential
drawbacksofACEbookcouldbethattravellingtodifferentplacesaroundEurope
or other countries can be an issue for some people, especially those individuals
withASDwhomaybelessabletotravelorliveindependently.Thisisinaddition
tothecost,timeandeffortneededforarrangingandattendingameetingtohave
the chance to communicate with new people. In addition to these drawbacks,
trustingsomeoneonlineandplanningforpersonalmeetingscouldputtheperson
under theriskofbeingabused.EncouragingArabuserswithASD touseasocial
networksuchasACEbookmightraiseparticularconcerns,opinionsandviewsthat
willbediscussedfurtherinSection3.2.4.2.
InastudybyGraham(2012),Facebookwasusedforimprovingthesocialskillsof
individualswithASD.The studywas implemented in aprivate special education
schoolinsouthernNewJersey,USA.Teachingandtrainingparticipantshowtouse
Facebook properlywas also undertaken in the study. The effectiveness of social
mediainimprovingsocialcommunicationskillswasmeasuredbeforelearningthe
useofFacebookandthenafterwards.Thestudyshowedtheeffectivenessofsocial
mediainimprovingsocialcommunicationskills.Itshowedaslightimprovementin
initiating conversations, maintaining already known friendships and preventing
users frombullyingothers.A teacheralso reported thatparticipantsmightbuild
new friendships if they had more time to continue the project. In addition, the
studyshowedimprovementsinface-to-faceengagementfortheparticipantsinthe
classwiththeirpeers.
Another study, by Bahiss, Cunningham and Smith (2010), was implemented to
investigatewhether social networking siteswere appropriate for teenagerswith
ASDandwhethersuchsiteswerepropercommunicationtoolsforthem.Thestudy
tested the usability and accessibility of the Facebook andOrkut social networks
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withfiveteenagerswithASD.Participantswereaskedtoperformbasictaskssuch
as creating a profile, adding a friend, messaging a friend, adding a community,
uploading an image and removing an image. The study did not focus much on
sociabilityi.e.,interactionwithpeople,viathesenetworks.Itwasmoreconcerned
with the effectiveness of the system, the ease of use efficiency, utility and user
support. However, this study involved participants with different levels of ASD,
includinglow-functioningautism.Itwasclearthathigher-functioningparticipants
weremorepositiveabouttheuseofsocialnetworks.Theresultsshowedthatthe
testednetworksiteswereeffectiveandefficientbutnoteasytouse.They lacked
spellinghelpandverbalprompts, leadingtotheneedforadditionallearning,and
theyhadtoomuchinformation,whichcausedconfusionandfrustration.Bahisset
al. (2010) concluded that teenagers with ASD preferred to interact and
communicateviaonlinesiteswhentheycouldbeinvolvedinanactivity,andthat
theywerenotmotivatedbythefunctionalityofthecommonsocialnetworks.The
aimof this current researchwas tobring the efficiencyof these social networks
togetherwiththeabilitytobeinvolvedinanactivityviacommunicatingaboutthe
imagesuploadedonthesocialnetwork.
Moreover, a study by Mazurek (2013) investigated the use of social media by
peoplewithASDinthecasethequantityandqualityof friends,andloneliness. It
has been found from their study that social connection and engagement is a
primaryreasonforusingsocialnetworksamongstindividualswithASDwithinthe
Western culture. Whereas, maintaining contact with family members and using
socialmediaforbusinesspurposeswastheleastreasonsofusingsocialnetworks
amongtheindividualswithASD.Inaddition,adultswithASDwhousesocialmedia
were foundmore likely to have close friends than those who do not use social
media. For adults with ASD, having offline friendships and relationships had an
impact on decreasing loneliness, but there was no difference in the level of
lonelinessbetweentheparticipantswhowereusingsocialnetworksandwhowere
not;however,thisfindingneedsmoreexploration(Mazurek,2013).
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Inanotherstudytheuseofsocialmediabyindividualswhouseaugmentativeand
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