UNIVERSITYOFSOUTHAMPTON

FACULTYOFPHYSICALSCIENCES&ENGINEERING

SchoolofElectronicsandComputerScience

CulturalFactorsandUsabilityofOnlineSocialNetworksbyAdultswithAutism

SpectrumDisorder(ASD)inSaudiArabia

by

AlaaAbdulwahabMashat

ThesisforthedegreeofDoctorofPhilosophy

October2016

i

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.

ii

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.

iii

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

iv

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

v

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

vi

AppendixDThematicAnalysis..................................................................................................................279AppendixEContentAnalysis.....................................................................................................................283AppendixFSurveyAddressedtoAdultswithASD...........................................................................303

vii

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

viii

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

ix

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

xi

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

xii

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:…………………………………………………………………………….

xiii

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.

xv

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

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).

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

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

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

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

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

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

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.

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.

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.

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

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

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.

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

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

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).

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,

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

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).

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

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

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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25

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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26

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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27

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