1 / 64

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.

Roberta
Download Presentation

Information Technology & The Autistic Culture:

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  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

More Related