information technology & the autistic culture:
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[email protected]. 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. - PowerPoint PPT PresentationTRANSCRIPT
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Information Technology & The Autistic Culture:Influences, Empowerment, & Progression of IT Usage in
Advocacy Initiatives
Scott Michael RobertsonPh.D. CandidateInformation Sciences & TechnologyThe Pennsylvania State University
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Contacting Me
Questions, comments, thoughts always welcome Email: [email protected] Instant Messaging:
AIM: hppalm MSN (Windows Live): [email protected] Yahoo Messenger: psuresearcher Google Talk: aspiegeek Jabber: [email protected]
Telephone: available upon request
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About Me: Multiple “Hats”
Multiple Perspectives on autism: Autistic Adult Researcher Educator, Mentor Advocate/Self-Advocate
Cross-informative & complementary
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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
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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
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IST Building (Winter Time)
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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
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Multiple “Hats”: My Advocate “Hat”
Speaker Writer Autistic Self-Advocacy Network (ASAN)
VP & PA Director PA Bureau of Autism Services
Adult Services Advisory Committee
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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
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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)
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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)
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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
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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
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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
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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)
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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
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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.
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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.
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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
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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)
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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
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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
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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.
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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.
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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
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Early Online IT Usage:Usage Themes
Discussion of autistic identity & differences Shared interests & passions Advocacy & Creation of ANI Creation of Autreat
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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
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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
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Current Trends, Autistics, & IT:Online Communities
Many autistic-run communities spread throughout the Web
International presence Largest communities
Wrongplanet.net (U.S.) Autsider (International)
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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
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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)
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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
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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
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Current Trends, Autistics, & IT:
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
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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+)
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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
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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
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Current Trends, Autistics, & IT:
Blog Discussions
Neurodiversity Dispelling junk science Autism Myths Postsecondary education & employment Many Other topics
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Current Trends, Autistics, & IT:Usage Themes
Clearing Misunderstandings & Myths Autistic-run advocacy & social organizations Discussion of shared interests & passions Political Advocacy Dating & Relationships
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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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
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Postsec. Education & Autism:Media Attention
“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
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Postsec. Education & Autism:Academia & Professional Academia
Journal articles & conference papers Growing source of interest
Many papers published in last 4-5 years Still small num. of total papers
Professional World Publicly available articles & podcasts Again, growing interest Still small num. of total papers
Books 4 major books (2 from the U.K.) 1 book chapter
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Postsec. Education & Autism:Major Stakeholder Groups (5)
Autistic Students postsecondary level secondary level
Educators & Administrators postsecondary level secondary level
Parents & Family Members
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Postsec. Education & Autism:My Proposed Studies Interviews
Interviews w/ members of 5 stakeholder groups face-to-face, telephone, IM, etc. knowledge, experiences, perspectives
Postsecondary education planning documents Secondary level (e.g. middle schools & high schools) Postsecondary level (e.g. colleges & universities)
Autism-specific college/university programs Planning & development process Collaboration w/ secondary level
Secondary transition programs Planning & development process Collaboration w/ postsecondary level
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Postsec. Education & Autism: Portal & Tech. Infrastructure
Informed by studies w/ stakeholder groups Potential technology options:
Threaded Discussion Forums User & Shared Blogging Audio & Video Podcasting Instant messaging/Private messaging Email Discussion Lists
Connection to existing online communities Autism-specific communities Social networking sites (e.g. Facebook, Youtube)
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Postsec. Education & Autism:Portal & Social Infrastructure
Informed by studies w/ stakeholder groups Social psychology theories of communities &
online communities Bond Theory & Identity Theory (Ren, Kraut, &
Keisler, 2007) group identity w/in the community relationships between members & sub-groups
Theories of educational communities of practice
Social-cultural perspective of autistics
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Contacting Me
Questions, comments, thoughts always welcome Email: [email protected] Instant Messaging:
AIM: hppalm MSN (Windows Live): [email protected] Yahoo Messenger: psuresearcher Google Talk: aspiegeek Jabber: [email protected]
Telephone: available upon request
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References: Postsec. Education (Media)
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
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References:Postsec. Education (Books)
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
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References:Nonverbal Comm. 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
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References:Auditory Processing 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
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References:Autism & Autistic Community 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/063097techcol.html
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References:Alan Turing 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
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References:Videos & Blogs Olinkiewicz, A. (2007), “In My Mind” [Video] Retrieved May 7,
2007 from http://www.youtube.com/watch?v=rbgUjmeC-4o Pesner, J. (2007), “Autism: From The Source: A Monologue By
Jeremy Pesner” [Video] Retrieved May 7, 2007 from http://www.youtube.com/watch?v=dmhfm81Vxuo
Abfh (2007a) “Barack Obama: Campaign of Hope” http://autisticbfh.blogspot.com/2007/04/barack-obama-campaign-of-hope.html
Abfh (2007b) “Hillary Clinton’s Final Solution” http://autisticbfh.blogspot.com/2007/04/hillary-clintons-final-solution.html
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References:Other
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