srobertsonist psu edu 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 l l l Questions, comments, thoughts always welcome Email: srobertson@ist. psu. edu Instant Messaging: l l l AIM: hppalm MSN (Windows Live): srobertson@ist. psu. edu Yahoo Messenger: psuresearcher Google Talk: aspiegeek Jabber: hppalm@jabber. org Telephone: available upon request
About Me: Multiple “Hats” l Multiple Perspectives on autism: l l l Autistic Adult Researcher Educator, Mentor Advocate/Self-Advocate Cross-informative & complementary
Multiple “Hats”: My Autistic Adult “Hat” l l Somewhat self-explanatory Common story: l Self-dx after reading a book on autism in ‘ 99 l l l 1 st Yr. of College Mindblindness Clinically diagnosed: ~6 yrs. later
Multiple “Hats”: My Researcher “Hat” l Third year Ph. D. student @ Penn State l l College of Information Sciences & Technology Multidisciplinary research: l l Information, Technology, People Thesis Focus: l l l 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
IST Building (Winter Time)
Multiple “Hats”: My Educator “Hat” l Summer program for adolescents and young adults of cognitive difference l Pittsburgh, PA l Affiliated w/ Carnegie Mellon Univ. (now La Roche College) l Taught: l l l 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) l Classroom volunteer (1 term) Social Group For Autistic Teens l Co-organizer
Multiple “Hats”: My Advocate “Hat” l l l Speaker Writer Autistic Self-Advocacy Network (ASAN) l l VP & PA Director PA Bureau of Autism Services l Adult Services Advisory Committee
Penn State Natl. Autism Conference l l l July 30 -August 3 State College, PA I’m hosting 2 sessions: l l Opening Keynote Presentation: Adolescence, Adulthood, & The Autism Spectrum Postsecondary Education Transition For Autistic Students
Overview l l Jargon Jogger Influences on IT Usage by Autistic Community Early History of Autistics’ IT Usage Recent Developments l l l Platforms Usage Themes Emerging Usage Themes l l Service community (ex. postsecondary education portal) Simulations & virtual environments (ex. Brigadoon)
Jargon Jogger l l l l IT=information technology l 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 f 2 f=face-to-face communication (in-person) synchronous comm. =at the same time l e. g. a telephone conversation, a f 2 f conversation asynchronous comm. =not at the same time l e. g. an email message, a letter, website post, newsgroup post asynchronous & synchronous hybrid l instant messaging, text messaging, IRC (Internet Relay Chat)
IT & Autistic Community: Influences l l l 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 l l Including sensory environment 6. Relatively anonymous
Influences on IT Usage: 1. Logical-Systematic Nature l Systematically organized, designed, used l l l Fits cognitive style of many autistics l l Software programmed w/ algorithmic units Hardware targeted for specific function & purpose Logical, Rational, Rule-based Designed by & for autistics l l l Dr. Alan Turing, father of computer science Creator of Turing Machine l abstract model used in modern computers today Described as autistic by many authors l e. g. O’Connel & Fitzgerald, 2003; Tofs, Johnson, & Cavallaro, 2003; James, 2005; Elder, 2005
Influences on IT Usage: 2. Nonverbal Comm. l Challenges of nonverbal comm. for autistics l l l Throughout the lifespan l l Self-reported (including this presenter) Identified in studies l (e. g. Barnhill et al. , 2002; Scott, 1985; Howlin, 2000; Coning & Magill-Evans, 2001; Sperry & Mesibov, 2005) Develop compensatory strategies & adapt Certain degree of challenge remains (usually) Nonverbal channel categorization Nonverbal channel usage across comm. types
Influences on IT Usage: 2. Nonverbal Comm. : Types l Nonverbal Comm. Channels (Nowicki & Duke, 2002) l l l Visual Cues l Facial Expressions l Gestures l Postures/Body Movement l Clothing, Appearance, & Item Usage Auditory Cues (aka paralinguistic) l Tone of Voice, Volume, Prosody, Speech Rate, etc. Other Cues l Haptics (tactile actions) l Proxemics (spatial usage) l Chronemics (time usage)
Influences on IT Usage: 2. Nonverbal Comm. : Usage l Face-to-face communication: l l Telephone communication: l l l Visual Nonverbal Cues Auditory Nonverbal Cues Haptics, Proxemics, & Chronemics Auditory Nonverbal Cues Chronemics Online communication (text-based): l Chronemics
Influences on IT Usage: 3. Auditory Processing l Auditory vs. Visual Language Processing l Auditory Language l Transient § l Sequential § l high demand on attention focus & rapid language reception & expression Can’t go back to message parts w/o repeating/replaying Visual Language l Intransient (typically) § l Less demand on attention focus & speedy language reception & expression Non-sequential (typically) § Can re-read, re-scan, re-examine, re-analyze, re-scrutinize, etc.
Influences on IT Usage: 3. Auditory Processing (Cont. ) l Challenges of auditory language processing for autistics: l Self-reported l Identified in studies l l (e. g. Gervais et al. , 2004; Boddaert et al. , 2004, Jansson-Verkasalo et al. , 2003) Degree of challenges varies greatly l individual differences l physical environment l l social environment l l many competing sounds, loud background noise many people vs. fewer people state of mind l stress level, emotional state, recent & past experiences, etc.
Influences on IT Usage: 3. Auditory Processing (Cont. ) l Face-to-face comm. l l Telephone comm. l l moderate to high demand on auditory language processing very high demand on auditory language processing Text-based online comm. l no demand on auditory language processing
Influences on IT Usage: 4. Physical & Vocal Presence l Face-to-face comm. l Physical presence from: l l l Auditory (vocal) presence from: l l Visual cues (verbal & nonverbal cues) Tactile (haptic) cues Auditory cues (verbal & nonverbal) Telephone comm. l Auditory (vocal) presence from: l Auditory cues (verbal & nonverbal)
Influences on IT Usage: 4. Physical & Vocal Presence (2) l Challenges of visual/vocal presence: l l l Anxiety in social settings Nonverbal comm. difficulties (discussed earlier) Others’ interpretation of neurological differences: l Executive Functioning l Motor & Sensory l Social, Language, Comm. Past interactions w/ peers & others Can Lead to: l l l Peer & group rejection Shunning & denigrating Intolerant responses
Influences on IT Usage: 4. Physical & Vocal Presence (3) l Advantages of online presence: l l Presence from visual verbal cues only Words are powerful l Can evoke confidence, self-assurance Esp. in individuals w/ strong verbal skills Build self-confidence & self-esteem l l Empower further online comm. Empower physical/vocal interaction
Influences on IT Usage: 5. Control over environment l Comm. control l Sensory control l Can leave or break from conversation easily Walk away from computer/device, turn it off, etc. Change sounds, smells, & sights in your room Sensory environment not reflected in conversation l Unlike telephone conversation Task control l Can do other tasks in the background l Ex. watching TV, listening to music, playing videogames. etc.
Influences on IT Usage: 6. Anonymity & Other Adv. l Anonymity: l l l Online comm. can be untied from activities/events of physical world Can selectively present facets & details about yourself Other: l l Breaking past geographical & time barriers Sharing information, documents, etc.
Early Online IT Usage: Autistic Community l ANI l l l INLV l l l email lists website articles IRC Usage l l ANI-L email list & spinoffs website Starlink-IRC network channels Personal websites of autistics
Early Online IT Usage: Usage Themes l l Discussion of autistic identity & differences Shared interests & passions Advocacy & Creation of ANI Creation of Autreat
Early Online IT Usage: Creation of Autreat l l First autistic-run conference for autistics First held in 1996 in NY State l l l 1996 -2003 in NY State 2004 -present in Pennsylvania (Philly) Influenced Autscape l l l First autistic-run conference for autistics in Europe Established in the U. K. in 2005 Large IT Support: l l Autreatinfo Yahoo Group/Email List Website
Current Trends, Autistics, & IT: An Overview l Growth in Platforms l l l Online Communities Social networking sites IRC Discussion expansion Blogging Networks & Blogs Some Usage Themes l l l Clearing Misunderstandings & Myths Autistic-run advocacy & social organizations Discussion of shared interests & passions Political Advocacy Dating & Relationships
Current Trends, Autistics, & IT: Online Communities l l l Many autistic-run communities spread throughout the Web International presence Largest communities l l Wrongplanet. net (U. S. ) Autsider (International)
Current Trends, Autistics, & IT: Profile of Wrong. Planet. net l l Website: http: //www. wrongplanet. net Founded in June 2004 by 2 autistic teens l Alexander Plank in Virginia (now at George Mason Univ. ) l Dan Grover in Vermont (now at Northeastern Univ. ) Rapid Growth (in 3 yrs. ): l 11, 000+ members l 25 forum sections l ~30, 000 topics + ~700, 000 posts Mixed membership l Age range: ~ 7 to 60 l Backgrounds: autistics (mostly), family members, professionals
Current Trends, Autistics, & IT: Wrongplanet. net Creation l Challenges in collaboration for co-founders: l l l Distance Separation l 500+ miles between northern Virginia & Vermont l 10+ hour drive crossing 5+ states Time & Schedule Separation l Rigid high school schedules Internet-based coordination + Phone l l Email (asynchronous) Instant messaging (synchronous) Website posts (asynchronous) Telephone (synchronous)
Current Trends, Autistics, & IT: You. Tube l High autism-related video content l l l Highly Viewed Videos of Autistic Identity l l l 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 Alex Olinkiewicz’s “In My Mind” Amanda Baggs’ “In My Language” Jeremy Pesner’s diversity monologue Emily’s “I’m Autistic!” The Pos. Autive Group
Current Trends, Autistics, & IT: You. Tube & Pos. Autive l Websites: l l Created in 2006 500+ Videos l l l www. youtube. com/group/posautive www. posautive. org Video expansion at rapid rate l New videos uploaded every few days Subdivision into 5 sub-groups l Kids, Adults, Arts, Senses, & Savants ~ 150 Members l l Autistic Adults Non-autistics who support autistic identity & neurodiversity
Current Trends, Autistics, & IT: Facebook l l 11+ autistic groups Largest autistic groups (by membership): l l l 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 l based on: . 5% to 1. 5% of population * 25 million FB users
Current Trends, Autistics, & IT: IRC Expansion l IRC Usage in mid to late 1990 s: l l l Mainly two channels on Starlink-IRC #asperger & #autism Current IRC Usage: l l l Many channels (15+) Autistic-run servers/networks l Autism Globe l Chat. Autism l Aut. IRC Presence on many general networks worldwide (10+)
Current Trends, Autistics, & IT: Influential Blogs: l l 5, 000 -6, 000+ posts by aut-neurodiv. bloggers Autistic Bloggers: l l l Autism Diva Ballastexistenz. (Amanda Baggs) Rett Devil’s Rants (Kassiane Sibley) Whose Planet Is It Anyway? (Autistic BFH) Pro-Neurodiversity Bloggers: l l l Left Brain/Right Brain (Kevin Leitch) Autism Street Joy Of Autism Vox/Autism Land Natural Variation
Current Trends, Autistics, & IT: Blogging Networks l The Autism Hub: l l 50+ bloggers blogging by austistics & neurodiversity supporters More established blogs Auti. Blogger: l l l 20+ bloggers blogging only by autistics More emerging blogs
Current Trends, Autistics, & IT: Blog Discussions l l l Neurodiversity Dispelling junk science Autism Myths Postsecondary education & employment Many Other topics
Current Trends, Autistics, & IT: Usage Themes l l l Clearing Misunderstandings & Myths Autistic-run advocacy & social organizations Discussion of shared interests & passions Political Advocacy Dating & Relationships
Current Trends, Autistics, & IT: Misunderstandings & Myths l Discussions by autistics of: l l What it’s like to be autistic (from their perspective) Others’ misunderstandings of their differences Attacking widespread myths about autism You. Tube as a major outlet of expression
Current Trends, Autistics, & IT: You. Tube & Autistic Identity l Alex Olinkeiwicz, an autistic teen l l Amanda Baggs, an autistic adult l l l “In My Mind” video about experiences in life & school ~ 700, 000 views of the video + ~ 10, 000 comments & ~ 7, 000 ratings “In My Language” 250, 000+ views of the video + ~ 1, 000 comments & ~ 1, 300 ratings Jeremy Pesner’s diversity monologue
Current Trends, Autistics, & IT: Autistic-Run Organizations l l l Autistic-run & collaborative advocacy & social group organizations: examples l Autism Network International (ANI) l The Autism National Committee l The Autistic Self-Advocacy Network (ASAN) l AASCEND l GRASP l AAGW All depend highly on email list & websites l Discussion by membership l Articles, discussion forums, etc. Online collaboration for autistic culture events l International Asperger’s Year (2006) l Autistic Pride Day
Current Trends, Autistics, & IT: Political Advocacy l l Case example of blogging posts by ABFH (The Autistic Bitch From Hell) Blog commentary on Hillary Clinton l l l 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 l supporter of changing society’s attitudes towards those of developmental difference
Current Trends, Autistics, & IT: Dating l Online Dating may be easier for autistics l l Autistic communities & individuals have launched dating websites l l advantages of online IT mentioned earlier Wrongplanet. net’s Aspie Affection site Challenges: l l Real world tie-in to dating & relationships Males & females l many identified/self-identified autistics are males § l l 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
Autistics & Emerging IT Use: Trends l Simulations & Virtual environments l l Connecting autistic adults w/ educators & service providers l l Brigadoon community on Second Life Postsecondary education transition portal Other l l Autistic Adults Picture Project Autistic Picture Page Email Lists Instant Messaging
Autistics & Emerging IT Use: Autistic Adults Picture Project l l l Website: http: //www. isn. net/~jypsy/Au. Spin/a 2 p 2. htm Founded in 2004 by Janet Norman-Bain (aka jypsy) ~200 autistic adults listed Age range: 18 to 60 s Wide range of occupations: breakdancing, sculpting, cartooning, radio DJing, teaching, engineering, IT, science, music, etc.
Autistics & Emerging IT Use: The Autistic Picture Page l l l Website: www. picturepage. net Photo album detailing aspects of by autistic youth & adults Categories: l l l l Humor Absorption Affection Sensory Religion Everyday Lives Contrasts
Autistics & Emerging IT Use: IM & Email Lists l IM: l l Natural social structure: buddy lists Hybrid of synchronous & asynchronous comm. l Benefits of email & phone w/o voice l Can do other tasks in background l May be too fast-paced for some autistics Integration w/ online communities l Wrongplanet. net Email Lists: l l Most email lists on Yahoo run by parents/professionals Growing number of email lists run by autistics
Autistics & Emerging IT Use: Postsec. Education Portal l Postsecondary education for autistic students l l l Media Attention from academia & professional world Stakeholder Groups My Proposed Studies Portal Infrastructure l l Technological Social-cultural
Postsec. Education & Autism: Media Attention l l l “Students On The Spectrum”, The New 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
Postsec. Education & Autism: Academia & Professional l Academia l l Professional World l l Journal articles & conference papers Growing source of interest l Many papers published in last 4 -5 years Still small num. of total papers Publicly available articles & podcasts Again, growing interest Still small num. of total papers Books l l 4 major books (2 from the U. K. ) 1 book chapter
Postsec. Education & Autism: Major Stakeholder Groups (5) l Autistic Students l l l Educators & Administrators l l l postsecondary level Parents & Family Members
Postsec. Education & Autism: My Proposed Studies l l Interviews w/ members of 5 stakeholder groups l face-to-face, telephone, IM, etc. l knowledge, experiences, perspectives Postsecondary education planning documents l Secondary level (e. g. middle schools & high schools) l Postsecondary level (e. g. colleges & universities) Autism-specific college/university programs l Planning & development process l Collaboration w/ secondary level Secondary transition programs l Planning & development process l Collaboration w/ postsecondary level
Postsec. Education & Autism: Portal & Tech. Infrastructure l l Informed by studies w/ stakeholder groups Potential technology options: l l l Threaded Discussion Forums User & Shared Blogging Audio & Video Podcasting Instant messaging/Private messaging Email Discussion Lists Connection to existing online communities l l Autism-specific communities Social networking sites (e. g. Facebook, Youtube)
Postsec. Education & Autism: Portal & Social Infrastructure l l Informed by studies w/ stakeholder groups Social psychology theories of communities & online communities l Bond Theory & Identity Theory (Ren, Kraut, & Keisler, 2007) l l group identity w/in the community relationships between members & sub-groups Theories of educational communities of practice Social-cultural perspective of autistics
Contacting Me l l l Questions, comments, thoughts always welcome Email: srobertson@ist. psu. edu Instant Messaging: l l l AIM: hppalm MSN (Windows Live): srobertson@ist. psu. edu Yahoo Messenger: psuresearcher Google Talk: aspiegeek Jabber: hppalm@jabber. org Telephone: available upon request
References: Postsec. Education (Media) l l l Moore, A. S. (Nov. 5, 2006) “Students On The Spectrum”, The New York Times Farrell, E. F. (Oct. 8, 2004) “Asperger’s Confounds Colleges, ” The Chronicle of Higher Education Passantino, D. (March 11, 2007) “Autistic Alone On Campus: , ” The Chicago Sun-Times Pickett, M. (2005) “An Asperger’s Life, ” The Billings Gazette Boen, J. L. (Sept. 1, 2004), “The Art of Living With Autism--University Student Draws On Ability, ” The News-Sentinel
References: Postsec. Education (Books) l l Prince-Hughes, D. (2002), Aquamarine Blue 5: Personal Stories of College Students with Autism Palmer, A. (2005) Realizing the College Dream with Autism or Asperger’s Syndrome: A Parent’s Guide To Student Success Harpur, J. , Lawlor, M. , & Fitzgerald, M. (2002), Succeeding in College with Asperger Syndrome: A Student Guide Jamieson, J. & Jamieson, C. (2004), Managing Asperger Syndrome At College And University: A Resource For Students, Tutors, And Support Services
References: Nonverbal Comm. l l l Nowicki, S. & Duke, M. (2002), Will I Ever Fit In? The Breakthrough Program For Conquering Adult Dyssemia Barnhill, G. P. , Cook, K. T. , Tebbenkamp, K. , & Myles, B. M. (2002), “The Effectiveness Of Social Skills Intervention Targeting Nonverbal Communication For Adolescents With Asperger Syndrome And Related Pervasive Developmental Delays, ” Focus on Autism and Other Developmental Disabilities, Vol. 17, No. 2, pp. 112 -118 Coning, C. & Magill-Evans, J. (2001), “Social And Language Skills In Adolescent Boys With Asperger Syndrome, ” Autism, Vol. 5, No. 1, pp. 23 -37 Scott, D. W. (1985), “Asperger’s Syndrome And Nonverbal Communication: A Pilot Study” The Journal of Psychological Medicine, Vol. 15. , No. 3, 683 -687 Howlin, P. (2000), “Outcome In Adult Life For More Able Individuals With Autism Or Asperger Syndrome, ” Vol. 4, No. 63, pp. 63 -84 Sperry, L. B. & Mesibov, G. B. (2005), “Perceptions of Social Challenges Of Adults With Autism Spectrum Disorder, ” Autism, Vol. 9, No. 4, pp. 362 -377
References: Auditory Processing l l l Boddaert, N. , Chabane, N. , Belin, P. , Bourgeois, M. , Royer, V. , Barthelemeny, C. , Mouren-Simeoni, M. , Phillipe, A. , Brunelle, F. , Samson, Y. , & Zilbovicius, M. (2004), “Perception of Complex Sounds in Autism: Abnormal Auditory Cortical Processing in Children, ” The American Journal of Psychiatry, Vol. 161, No. 11, pp. 2117 -2120 Gervais, H. , Belin, P. , Boddaert, N. , Leboyer , M. , Coez, A. , Sfaello, I. , Barthélémy C. , Brunelle F. , Samson Y. , & Zilbovicius M. (2004), “Abnormal cortical voice processing in autism. ” Natural Neuroscience, Vol. 7, No. 8, pp. 801 -802 Jansson-Verkasalo, E, Ceponiene, R, Kielinen, M, Suominen, K, Jäntti, V, Linna, S. L. , Moilanen, I. , Näätänen R. (2003), “Deficient auditory processing in children with Asperger Syndrome, as indexed by event-related potentials, ” Neuroscience Letters, Vol. 338, No. 3, pp. 197 -200
References: Autism & Autistic Community l l Sinclair, J. (2005) “Autism Network International: The Development Of A Community And Its Culture” http: //web. syr. edu/~jisincla/History_of_ANI. html Dekker, M. (1999), “On Our Own Terms: Emerging Autistic Culture”, autisticculture. com Kopp, R. (2002) “Autism List Change Of Ownership” http: //web. syr. edu/~rjkopp/data/farewell. html Blume, H. (June 30, 1997) “Autistics Are Communicating in Cyberspace” The New York Times, http: //nytimes. com/library/cyber/techcol/063097 techc ol. html
References: Alan Turing l l l O’Connell H. , Fitzgerald M. (2003). Did Alan Turing have Asperger’s syndrome? Irish Journal of Psychological Medicine. Vol. 20, No. 1, pp. 28 – 31. Copeland, B. J. (2006), “The Modern History of Computing, ” The Stanford Encyclopedia of Philosophy, http: //plato. stanford. edu/entries/computing-history Elder, J. (2005), Different Like Me: My Book of Autism Heroes James, I. (2005), Asperger Syndrome and High Achievement: Some Very Remarkable People Leader, J. (2000), “Asperger Specialist, Dr. Tony Attwood in NY” Disabilities Awareness, The New York State Commission On Quality of Care Tofts, D. , Johnson, A. , & Cavallaro, A. (2003), Prefiguring Cyberculture: An Intellectual History, MIT Press
References: Videos & Blogs l l Olinkiewicz, A. (2007), “In My Mind” [Video] Retrieved May 7, 2007 from http: //www. youtube. com/watch? v=rbg. Ujme. C-4 o Pesner, J. (2007), “Autism: From The Source: A Monologue By Jeremy Pesner” [Video] Retrieved May 7, 2007 from http: //www. youtube. com/watch? v=dmhfm 81 Vxuo Abfh (2007 a) “Barack Obama: Campaign of Hope” http: //autisticbfh. blogspot. com/2007/04/barack-obama-campaignof-hope. html Abfh (2007 b) “Hillary Clinton’s Final Solution” http: //autisticbfh. blogspot. com/2007/04/hillary-clintons-finalsolution. html
References: Other l Ren, Y. , Kraut, R. , & Keisler, S. (2007), “Applying Common Identity and Bond Theory to Design of Online Communities”, Organizational Studies, Vol. 28, No. 3, pp. 377 -408
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