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Information Technology & The Autistic Culture:

srobertson@ist.psu.edu. Information Technology & The Autistic Culture:. Influences, Empowerment, & Progression of IT Usage in Advocacy Initiatives. Scott Michael Robertson Ph.D. Candidate Information Sciences & Technology The Pennsylvania State University. Contacting Me.

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Information Technology & The Autistic Culture:

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  1. srobertson@ist.psu.edu Information Technology & The Autistic Culture: Influences, Empowerment, & Progression of IT Usage in Advocacy Initiatives Scott Michael Robertson Ph.D. Candidate Information Sciences & Technology The Pennsylvania State University

  2. Contacting Me • Questions, comments, thoughts always welcome • Email: srobertson@ist.psu.edu • Instant Messaging: • AIM: hppalm • MSN (Windows Live): srobertson@ist.psu.edu • Yahoo Messenger: psuresearcher • Google Talk: aspiegeek • Jabber: hppalm@jabber.org • Telephone: available upon request

  3. About Me: Multiple “Hats” • Multiple Perspectives on autism: • Autistic Adult • Researcher • Educator, Mentor • Advocate/Self-Advocate • Cross-informative & complementary

  4. Multiple “Hats”:My Autistic Adult “Hat” • Somewhat self-explanatory • Common story: • Self-dx after reading a book on autism in ‘99 • 1st Yr. of College • Mindblindness • Clinically diagnosed: ~6 yrs. later

  5. Multiple “Hats”:My Researcher “Hat” • Third year Ph.D. student @ Penn State • College of Information Sciences & Technology • Multidisciplinary research: • Information, Technology, People • Thesis Focus: • Technology support for postsecondary education transition for adolescents & young adults on the autistic spectrum • Stakeholder groups: autistic secondary & postsecondary students, secondary & postsecondary educators, parents • Primarily Qualitative & Design-based research

  6. IST Building (Winter Time)

  7. Multiple “Hats”:My Educator “Hat” • Summer program for adolescents and young adults of cognitive difference • Pittsburgh, PA • Affiliated w/ Carnegie Mellon Univ. (now La Roche College) • Taught: • computer programming (C++, Java), writing, journalism, photography, & social relationship skills (2 yrs.) • Mentored a student each yr. • Assistant director for 1 yr. • Autistic/Asperger’s support class (high school) • Classroom volunteer (1 term) • Social Group For Autistic Teens • Co-organizer

  8. Multiple “Hats”: My Advocate “Hat” • Speaker • Writer • Autistic Self-Advocacy Network (ASAN) • VP & PA Director • PA Bureau of Autism Services • Adult Services Advisory Committee

  9. Penn State Natl. Autism Conference • July 30-August 3 • State College, PA • I’m hosting 2 sessions: • Opening Keynote Presentation: Adolescence, Adulthood, & The Autism Spectrum • Postsecondary Education Transition For Autistic Students

  10. Overview • Jargon Jogger • Influences on IT Usage by Autistic Community • Early History of Autistics’ IT Usage • Recent Developments • Platforms • Usage Themes • Emerging Usage Themes • Service community (ex. postsecondary education portal) • Simulations & virtual environments (ex. Brigadoon)

  11. Jargon Jogger • IT=information technology • e.g. email, IM, websites, telephone, etc. • blog=short for web log: a web-based journal of events/thoughts • email list=email-based distributive messaging list • IM=instant messaging • f2f=face-to-face communication (in-person) • synchronous comm.=at the same time • e.g. a telephone conversation, a f2f conversation • asynchronous comm.=not at the same time • e.g. an email message, a letter, website post, newsgroup post • asynchronous & synchronous hybrid • instant messaging, text messaging, IRC (Internet Relay Chat)

  12. IT & Autistic Community:Influences • 1. Systematic-logical nature of IT • 2. Limits on Nonverbal Communication • 3. Lack of auditory processing • 4. Lack of physical & vocal presence • 5. Control over the social-culture & physical environment • Including sensory environment • 6. Relatively anonymous

  13. Influences on IT Usage:1. Logical-Systematic Nature • Systematically organized, designed, used • Software programmed w/ algorithmic units • Hardware targeted for specific function & purpose • Fits cognitive style of many autistics • Logical, Rational, Rule-based • Designed by & for autistics • Dr. Alan Turing, father of computer science • Creator of Turing Machine • abstract model used in modern computers today • Described as autistic by many authors • e.g. O’Connel & Fitzgerald, 2003; Tofs, Johnson, & Cavallaro, 2003; James, 2005; Elder, 2005

  14. Influences on IT Usage:2. Nonverbal Comm. • Challenges of nonverbal comm. for autistics • Self-reported (including this presenter) • Identified in studies • (e.g. Barnhill et al., 2002; Scott, 1985; Howlin, 2000; Coning & Magill-Evans, 2001; Sperry & Mesibov, 2005) • Throughout the lifespan • Develop compensatory strategies & adapt • Certain degree of challenge remains (usually) • Nonverbal channel categorization • Nonverbal channel usage across comm. types

  15. Influences on IT Usage:2. Nonverbal Comm.: Types • Nonverbal Comm. Channels (Nowicki & Duke, 2002) • Visual Cues • Facial Expressions • Gestures • Postures/Body Movement • Clothing, Appearance, & Item Usage • Auditory Cues (aka paralinguistic) • Tone of Voice, Volume, Prosody, Speech Rate, etc. • Other Cues • Haptics (tactile actions) • Proxemics (spatial usage) • Chronemics (time usage)

  16. Influences on IT Usage:2. Nonverbal Comm.: Usage • Face-to-face communication: • Visual Nonverbal Cues • Auditory Nonverbal Cues • Haptics, Proxemics, & Chronemics • Telephone communication: • Auditory Nonverbal Cues • Chronemics • Online communication (text-based): • Chronemics

  17. Influences on IT Usage:3. Auditory Processing • Auditory vs. Visual Language Processing • Auditory Language • Transient • high demand on attention focus & rapid language reception & expression • Sequential • Can’t go back to message parts w/o repeating/replaying • Visual Language • Intransient (typically) • Less demand on attention focus & speedy language reception & expression • Non-sequential (typically) • Can re-read, re-scan, re-examine, re-analyze, re-scrutinize, etc.

  18. Influences on IT Usage:3. Auditory Processing (Cont.) • Challenges of auditory language processing for autistics: • Self-reported • Identified in studies • (e.g. Gervais et al., 2004; Boddaert et al., 2004, Jansson-Verkasalo et al., 2003) • Degree of challenges varies greatly • individual differences • physical environment • many competing sounds, loud background noise • social environment • many people vs. fewer people • state of mind • stress level, emotional state, recent & past experiences, etc.

  19. Influences on IT Usage:3. Auditory Processing (Cont.) • Face-to-face comm. • moderate to high demand on auditory language processing • Telephone comm. • very high demand on auditory language processing • Text-based online comm. • no demand on auditory language processing

  20. Influences on IT Usage:4. Physical & Vocal Presence • Face-to-face comm. • Physical presence from: • Visual cues (verbal & nonverbal cues) • Tactile (haptic) cues • Auditory (vocal) presence from: • Auditory cues (verbal & nonverbal) • Telephone comm. • Auditory (vocal) presence from: • Auditory cues (verbal & nonverbal)

  21. Influences on IT Usage:4. Physical & Vocal Presence (2) • Challenges of visual/vocal presence: • Anxiety in social settings • Nonverbal comm. difficulties (discussed earlier) • Others’ interpretation of neurological differences: • Executive Functioning • Motor & Sensory • Social, Language, Comm. • Past interactions w/ peers & others • Can Lead to: • Peer & group rejection • Shunning & denigrating • Intolerant responses

  22. Influences on IT Usage:4. Physical & Vocal Presence (3) • Advantages of online presence: • Presence from visual verbal cues only • Words are powerful • Can evoke confidence, self-assurance • Esp. in individuals w/ strong verbal skills • Build self-confidence & self-esteem • Empower further online comm. • Empower physical/vocal interaction

  23. Influences on IT Usage:5. Control over environment • Comm. control • Can leave or break from conversation easily • Walk away from computer/device, turn it off, etc. • Sensory control • Change sounds, smells, & sights in your room • Sensory environment not reflected in conversation • Unlike telephone conversation • Task control • Can do other tasks in the background • Ex. watching TV, listening to music, playing videogames. etc.

  24. Influences on IT Usage:6. Anonymity & Other Adv. • Anonymity: • Online comm. can be untied from activities/events of physical world • Can selectively present facets & details about yourself • Other: • Breaking past geographical & time barriers • Sharing information, documents, etc.

  25. Early Online IT Usage:Autistic Community • ANI • ANI-L email list & spinoffs • website • INLV • email lists • website articles • IRC Usage • Starlink-IRC network channels • Personal websites of autistics

  26. Early Online IT Usage:Usage Themes • Discussion of autistic identity & differences • Shared interests & passions • Advocacy & Creation of ANI • Creation of Autreat

  27. Early Online IT Usage:Creation of Autreat • First autistic-run conference for autistics • First held in 1996 in NY State • 1996-2003 in NY State • 2004-present in Pennsylvania (Philly) • Influenced Autscape • First autistic-run conference for autistics in Europe • Established in the U.K. in 2005 • Large IT Support: • Autreatinfo Yahoo Group/Email List • Website

  28. Current Trends, Autistics, & IT:An Overview • Growth in Platforms • Online Communities • Social networking sites • IRC Discussion expansion • Blogging Networks & Blogs • Some Usage Themes • Clearing Misunderstandings & Myths • Autistic-run advocacy & social organizations • Discussion of shared interests & passions • Political Advocacy • Dating & Relationships

  29. Current Trends, Autistics, & IT:Online Communities • Many autistic-run communities spread throughout the Web • International presence • Largest communities • Wrongplanet.net (U.S.) • Autsider (International)

  30. Current Trends, Autistics, & IT: Profile of WrongPlanet.net • Website: http://www.wrongplanet.net • Founded in June 2004 by 2 autistic teens • Alexander Plank in Virginia (now at George Mason Univ.) • Dan Grover in Vermont (now at Northeastern Univ.) • Rapid Growth (in 3 yrs.): • 11,000+ members • 25 forum sections • ~30,000 topics + ~700,000 posts • Mixed membership • Age range: ~ 7 to 60 • Backgrounds: autistics (mostly), family members, professionals

  31. Current Trends, Autistics, & IT: Wrongplanet.net Creation • Challenges in collaboration for co-founders: • Distance Separation • 500+ miles between northern Virginia & Vermont • 10+ hour drive crossing 5+ states • Time & Schedule Separation • Rigid high school schedules • Internet-based coordination + Phone • Email (asynchronous) • Instant messaging (synchronous) • Website posts (asynchronous) • Telephone (synchronous)

  32. Current Trends, Autistics, & IT:YouTube • High autism-related video content • Search for autism: ~6,000 videos • Search for autistic: ~4,000 videos • Search for Asperger: ~1,000 videos • Search for PDD-NOS: additional 63 videos • Highly Viewed Videos of Autistic Identity • Alex Olinkiewicz’s “In My Mind” • Amanda Baggs’ “In My Language” • Jeremy Pesner’s diversity monologue • Emily’s “I’m Autistic!” • The PosAutive Group

  33. Current Trends, Autistics, & IT:YouTube & PosAutive • Websites: • www.youtube.com/group/posautive • www.posautive.org • Created in 2006 • 500+ Videos • Video expansion at rapid rate • New videos uploaded every few days • Subdivision into 5 sub-groups • Kids, Adults, Arts, Senses, & Savants • ~ 150 Members • Autistic Adults • Non-autistics who support autistic identity & neurodiversity

  34. Current Trends, Autistics, & IT: Facebook • 11+ autistic groups • Largest autistic groups (by membership): • Autistic Advocates (400+ members) • Asperger Makes Me Who I Am (~200 members) • People with Autism & Asperger’s Syndrome (130+ members) • Don’t Cure Me: Autistics & Aspies Against A Cure (80+ members) • ~ 100,000-300,000 autistic FB users • based on: .5% to 1.5% of population * 25 million FB users

  35. Current Trends, Autistics, & IT:IRC Expansion • IRC Usage in mid to late 1990s: • Mainly two channels on Starlink-IRC • #asperger & #autism • Current IRC Usage: • Many channels (15+) • Autistic-run servers/networks • Autism Globe • ChatAutism • AutIRC • Presence on many general networks worldwide (10+)

  36. Current Trends, Autistics, & IT:Influential Blogs: • 5,000-6,000+ posts by aut-neurodiv. bloggers • Autistic Bloggers: • Autism Diva • Ballastexistenz.(Amanda Baggs) • Rett Devil’s Rants (Kassiane Sibley) • Whose Planet Is It Anyway? (Autistic BFH) • Pro-Neurodiversity Bloggers: • Left Brain/Right Brain (Kevin Leitch) • Autism Street • Joy Of Autism • Autism Vox/Autism Land • Natural Variation

  37. Current Trends, Autistics, & IT: Blogging Networks • The Autism Hub: • 50+ bloggers • blogging by austistics & neurodiversity supporters • More established blogs • AutiBlogger: • 20+ bloggers • blogging only by autistics • More emerging blogs

  38. Current Trends, Autistics, & IT: Blog Discussions • Neurodiversity • Dispelling junk science • Autism Myths • Postsecondary education & employment • Many Other topics

  39. Current Trends, Autistics, & IT:Usage Themes • Clearing Misunderstandings & Myths • Autistic-run advocacy & social organizations • Discussion of shared interests & passions • Political Advocacy • Dating & Relationships

  40. Current Trends, Autistics, & IT:Misunderstandings & Myths • Discussions by autistics of: • What it’s like to be autistic (from their perspective) • Others’ misunderstandings of their differences • Attacking widespread myths about autism • YouTube as a major outlet of expression

  41. Current Trends, Autistics, & IT:YouTube & Autistic Identity • Alex Olinkeiwicz, an autistic teen • “In My Mind” • video about experiences in life & school • ~ 700,000 views of the video + ~ 10,000 comments & ~ 7,000 ratings • Amanda Baggs, an autistic adult • “In My Language” • 250,000+ views of the video + ~ 1,000 comments & ~ 1,300 ratings • Jeremy Pesner’s diversity monologue

  42. Current Trends, Autistics, & IT:Autistic-Run Organizations • Autistic-run & collaborative advocacy & social group organizations: examples • Autism Network International (ANI) • The Autism National Committee • The Autistic Self-Advocacy Network (ASAN) • AASCEND • GRASP • AAGW • All depend highly on email list & websites • Discussion by membership • Articles, discussion forums, etc. • Online collaboration for autistic culture events • International Asperger’s Year (2006) • Autistic Pride Day

  43. Current Trends, Autistics, & IT:Political Advocacy • Case example of blogging posts by ABFH (The Autistic Bitch From Hell) • Blog commentary on Hillary Clinton • professed an intention to “cure and wipe out anything along the autism spectrum” in an announcement of autism legislation posted in a video clip on Youtube • Allied w/ Autism Speaks • Blog commentary on Barak Obama • supporter of changing society’s attitudes towards those of developmental difference

  44. Current Trends, Autistics, & IT:Dating • Online Dating may be easier for autistics • advantages of online IT mentioned earlier • Autistic communities & individuals have launched dating websites • Wrongplanet.net’s Aspie Affection site • Challenges: • Real world tie-in to dating & relationships • Males & females • many identified/self-identified autistics are males • likely because of societal attitudes/stds/norms toward females • most autistics on the dating sites are males • autistic males seeking female autistic partners have a difficulty in finding partners

  45. Autistics & Emerging IT Use:Trends • Simulations & Virtual environments • Brigadoon community on Second Life • Connecting autistic adults w/ educators & service providers • Postsecondary education transition portal • Other • Autistic Adults Picture Project • Autistic Picture Page • Email Lists • Instant Messaging

  46. Autistics & Emerging IT Use: Autistic Adults Picture Project • Website: http://www.isn.net/~jypsy/AuSpin/a2p2.htm • Founded in 2004 by Janet Norman-Bain (aka jypsy) • ~200 autistic adults listed • Age range: 18 to 60s • Wide range of occupations: breakdancing, sculpting, cartooning, radio DJing, teaching, engineering, IT, science, music, etc.

  47. Autistics & Emerging IT Use: The Autistic Picture Page • Website: www.picturepage.net • Photo album detailing aspects of by autistic youth & adults • Categories: • Humor • Absorption • Affection • Sensory • Religion • Everyday Lives • Contrasts

  48. Autistics & Emerging IT Use:IM & Email Lists • IM: • Natural social structure: buddy lists • Hybrid of synchronous & asynchronous comm. • Benefits of email & phone w/o voice • Can do other tasks in background • May be too fast-paced for some autistics • Integration w/ online communities • Wrongplanet.net • Email Lists: • Most email lists on Yahoo run by parents/professionals • Growing number of email lists run by autistics

  49. Autistics & Emerging IT Use: Postsec. Education Portal • Postsecondary education for autistic students • Media Attention • Attention from academia & professional world • Stakeholder Groups • My Proposed Studies • Portal Infrastructure • Technological • Social-cultural

  50. Postsec. Education & Autism:Media Attention • “Students On The Spectrum”, TheNew York Times, Nov. 2006 • “Asperger’s Confounds Colleges”, The Chronicle of Higher Education, 2004 • “Autistic Alone On Campus:,” The Chicago Sun-Times, 2007 • “An Asperger’s Life,” The Billings Gazette, 2005 • “The Art of Living With Autism--University Student Draws On Ability”, The News-Sentinel, 2004

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