Information Technology & The Autistic Culture:Influences, Empowerment, & Progression of IT Usage in

Advocacy Initiatives

Scott Michael RobertsonPh.D. CandidateInformation Sciences & TechnologyThe Pennsylvania State University

srobertson@ist.psu.edu

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

About Me: Multiple “Hats”

Multiple Perspectives on autism: Autistic Adult Researcher Educator, Mentor Advocate/Self-Advocate

Cross-informative & complementary

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

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

IST Building (Winter Time)

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

Multiple “Hats”: My Advocate “Hat”

Speaker Writer Autistic Self-Advocacy Network (ASAN)

VP & PA Director PA Bureau of Autism Services

Adult Services Advisory Committee

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

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)

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)

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

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

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

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)

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

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.

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.

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

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)

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

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

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.

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.

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

Early Online IT Usage:Usage Themes

Discussion of autistic identity & differences Shared interests & passions Advocacy & Creation of ANI Creation of Autreat

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

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

Current Trends, Autistics, & IT:Online Communities

Many autistic-run communities spread throughout the Web

International presence Largest communities

Wrongplanet.net (U.S.) Autsider (International)

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

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)

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

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

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

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+)

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

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

Current Trends, Autistics, & IT:

Blog Discussions

Neurodiversity Dispelling junk science Autism Myths Postsecondary education & employment Many Other topics

Current Trends, Autistics, & IT:Usage Themes

Clearing Misunderstandings & Myths Autistic-run advocacy & social organizations Discussion of shared interests & passions Political Advocacy Dating & Relationships

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

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

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

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

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

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

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.

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

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

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

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

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

Postsec. Education & Autism:Major Stakeholder Groups (5)

Autistic Students postsecondary level secondary level

Educators & Administrators postsecondary level secondary level

Parents & Family Members

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

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)

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

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

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

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

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

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

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

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

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

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