The internet: a comfortable place for communication for people on the autistic spectrum?

The internet: a comfortable place for communication for people on the autistic spectrum? • “The impact of the Internet on autistics may one day be compared in magnitude to the spread of sign language on the deaf” • Harvey Blume, New York Times, 1997 Penny Benford and Penny Standen, School of Community Health Sciences, University of Nottingham, UK

Overview of this presentation • Brief background to my research study • Key survey findings • Key interview themes how participants viewed Internet based communication: • Control • Empowerment • Disinhibition • Social network sites • Opportunities and risks

Two stage project • To investigate how and why people with Asperger syndrome (AS) or high functioning autism (HFA) do or do not use the Internet as a communication medium. • Postal/web-based survey completed by 138 adults (over 16 years old) • Email/postal interviews with a subset of individuals from the survey sample regarding Internet-based communication

Researcher sends email to volunteer, introducing a (new) topic and asks for opinions, thoughts and experiences about it Volunteer sends an email containing reply Researcher sends a follow up email with questions about what has been said Researcher reads reply Follow up questions needed No follow up questions needed All topics have now been covered, interview finishes Email interview process

Survey: key findings (1) • High levels of computer and Internet use and Internet based communication • Asynchronous, text-based forms of communication (email and conventional mail), were more popular than synchronous forms of communication (face to face, online chat or telephone)

Survey: key findings (2) • People with lower levels of offline social contact were more likely to take part in online groups. • There was an inverse relationship between the level of offline contact with friends and the time spent on the Internet. • Younger people and those with a higher level of social contact were more likely to agree that they took part in online groups to meet new people. • The degree to which people would miss Internet-based communication was associated with how often they exchanged email with online groups and also with how often they took part in chat rooms.

Interview findings (1): Control, choice, structure and distance • “Communicating is like your first driving lesson; so many things to do and it all feels so unnatural and like you'll never manage to do all of these things together” • Simpler, less transient, more flexible timing – may restore some control • Search for others online – more possibilities • Rules and moderation – guide and structure interactions • Social distance and visual anonymity – feel safer

Getting more control over.... • One’s own emotional responses • How others may react to what you say • How one is perceived • The structure of the conversation • The ability to get thoughts into words • Processing the communication of others • Dealing with too many stimuli simultaneously • One’s availability to others • Dealing with the stress of spoken communication

...one’s emotional response “The beauty of online communication is the fact that one may read over the post before making it, read the email before sending it, and press delete. There is usually an 'edit' option on message boards so if a message is sent and the person feels they have been too aggressive/obsessive then they may edit it.” “If I receive an email, the contents of which I anticipate I won't like, I can leave it until I'm in the right frame of mind for dealing with it. Sometimes when I don't anticipate an adverse comment or reaction, I can still give myself time to get over my initial rage and still give an honest, but measured response.”

...how others may react to what you say “do sometimes spend ages trying to soften up something that could quite happily exist in a few direct sentences except the individual you are sending it to is "sensitive". In this sense e-mail is great as you have time to go over and tinker.” “Also when the discussion gets heated I won't have an angry or upset person standing in front of me, that would be very hard to deal with for me.”

...how one is perceived “I think that the 'first impressions' that we give off can be less worrying when it is all down to textual communication” “Only my words are judged, not my behaviour.”

...the structure of the conversation “You can take as much time as you like - ie not under pressureYou have total control (my favorite) - the conversation goes where you want, often people will move it away too soon or once moved be reluctant to go back as though it was all finished. I'm not known for my lightning intellect - only once things have had a chance to sink in and gell a bit can come out with a thought out response - people rate speed of reply as quality - no speed no voice”

...the ability to get thoughts into words “Emails have all of the advantages of letters, they give me time to think about what I want to communicate; they allow me to dump my thoughts and then rearrange them”

...processing the communication of others “First off, being online eradicates all those 'awkward silences' you'd have in conversation due to (in my case) needing time to comprehend exactly what somebody means before responding.”

...sensory overload “Also when chatting in a chat room, I don't hear lots of people talking at once. There is no noise at all. When talking to someone in a room full of people, I also hear lots of other people all talking at once. It just sounds like a noisy babble. I am not able to tune this out...”

...one’s availability to others “The final and one of the best benefits of online communities is that when I simply don't feel like chatting, I can switch off! Nobody can infiltrate my space unless I allow them to...”

...the stress of face-to-face communication “Internet communication therefore takes away much of the frustration and incomprehension I experience with face to face encounters.” “Internet is calmer, less stressful, less energy draining.”

Interview findings (2): Liberation and empowerment • Self expression, presentation, and roles • Therapeutic benefit • Group participation, demarginalisation • Gaining support • Integration in to the workplace • Benefits to offline interactions

Interview findings (3): Liberation and disinhibition • Neglect of “real life”, face-to face relationships and interaction • Excessive use – financial implications, negative reactions from employers, significant others • Personal vulnerability due to self-disclosure

What about the social network phenomenon?

Burke et al 2010 • Interview study 16 adults with ASC • Specific interest base and pre-packaged social interactions could help some participants initiate new contacts • Continuation of relationships was impeded by concerns about trust, self-disclosure and understanding online social norms. • Few close face-to-face friends and ephemeral online relationships meant many had no one to talk to online • Suggests a) Internet specific social skills training and b) information visualisation of own behaviour

Opportunities and risks • Opportunities for: • social inclusion • self-advocacy • online support: peers, counselling, CBT, social skills training • participation in research • Risks of: • overuse, self-disclosure and the undesirable behaviour of others

The internet: a comfortable place for communication for people on the autistic spectrum?