The History of ASAN AU – A Paper
The development of an online network of self advocates: An application of technology to overcome social barriers inherent in a disability.
The Autistic Self Advocacy Network of Australia had its beginnings in technology in the late 1990’s when adults diagnosed with an Autism Spectrum Disorder (ASD) first began to have an online presence in Australia. Adults began building their own websites and started reaching out through online forums and web based ‘chat’ applications such as Internet Relay Chat (IRC). Since that time a network of support has developed through the use of technology that enables otherwise socially isolated adults to interact, share thoughts and feelings, troubleshoot issues and provide support to younger people with an ASD. Interviews with adults with ASD who are part of this network have been conducted and this paper will explore their experiences with the technology of the internet and reflect upon relevant literature (pseudonyms are used where requested). The aim is to give the audience an insight into the lived experience of an evolution of the use of the Internet by people with ASD and explore the impact that this technology has had and is still having on their lives. Ultimately what will be demonstrated is the organic process of the development of a network of people with a disability that was and is made possible by the technology of the internet.
The Autism Spectrum
Autism Spectrum Disorders, Asperger syndrome and Autistic Disorder are Pervasive Developmental Disorders characterized by a triad of impairments in the areas of communication, socialization and imagination (APA, 1994). The social and communication challenges faced by a person with ASD include an inability to use language as a communication tool for effective social interaction and a lack of understanding of the rules that govern verbal and non-verbal social interaction, this may typically lead to isolation from peers, failure to develop friendships and close relationships, and an increased likelihood of becoming the victims of bullying and harassment (Attwood, 2007). Davidson (2007) asserts that perceptual differences associated with autism hinder typical communication with the result that the words and actions of others can be unpredictable, and indecipherable or even scary for those on the spectrum.
Many first person accounts of ASD (Williams, 1996; Lawson, Hadcroft, 2005; Holliday- Willey, 1999) speak to this social isolation and bewilderment in the face of social interaction that seems for the most part to come quite easily to the typical population. First person writing also relays blow by blow accounts of the bullying that seems to befall many people with ASD:
“During my time in 2W1 I continued to feel vulnerable and anxious, like being rolled up inside a giant carpet and left to find my own way out. Whenever I panicked or froze, the bullies were always ready to set upon me. In the play court, if I hadn’t managed to hook up with Ian, the vultures would descend upon me.” (Hadcroft, 2005, p. 69)
Much of the treatment for ASD is aimed at addressing the core deficits and teaching communication and social relatedness skills (Attwood, 2007; Smith Myles & Simpson, 2001 ; Gray, 2000). However for many with an ASD learning skills that enable them to operate in a majority culture (a social one) still leaves them in the position of being a minority within that majority.
Technology – Overcoming Barriers and Accessing Social and Cultural Spaces
In an attempt to address this minority status many people with ASD who can access computer and internet technology have turned to this medium to have a set of social and cultural needs met. In discussing intervention for adults with ASD a leading psychologist in the field suggests:
“The adult [with ASD] may benefit from joining an Internet support group or chat room. This can provide a sense of belonging to a distinct and valued culture and an opportunity to consult members of the culture for advice.” (Attwood, 2006, p. 49)
As highlighted by McLimens and Gordon (2009), the creator of the World Wide Web (WWW), Tim Berners-Lee, considered his invention to be a social one rather than a technical one. Examples of Berners-Lee’s social invention are becoming more apparent now with the advent of Web 2.0 technology that allows user content to be shared more readily via the WWW with sites such as MySpace, Facebook and user generated weblogs or ‘blogs’ becoming prolific.
However back at the turn of the century Web 2.0 applications were not available and users had to be quite technologically advanced to post and manage web content and to download applications that would allow them to ‘chat’ via the WWW. None the less people with ASD began to emerge onto the Internet and started to make connections to information and to each other. One of the first Australian sites authored by a man with ASD emerged in the mid 1990’s. Others who had similar experiences were attracted to this man and began communicating with him via email discussion lists.
Tony the man that developed one of the first ‘first person’ ASD site in Australia was diagnosed with Asperger syndrome as an adult and found few resources that met his needs.
“The biggest benefit [of the online support network] is the knowledge that “you are not alone”, which was one benefit I didn’t really have. That in itself was one reason I started writing on the web in 1995. Support for me has been somewhat of a two way street, giving as much as getting.” (T. Langdon, personal communication, June 12, 2009).
For Tony online support has been a continual source of interaction with other people on the autism spectrum and a way of developing and maintaining a circle of friends.
Finn (1999) highlighted many reasons as to why online groups were emerging as an important development in self-help for people with disabilities. He suggested that these groups would eliminate a number of barriers including time and distance, oral communication issues, the challenges of face-to-face interaction, and interpersonal difficulties and offer some anonymity to users who may not wish to disclose their identity. This would seem to offer people with ASD who have social and communication barriers a chance at a forum in which some of these barriers are removed.
Cameron (‘Cameron’, personal communication, June 12, 2009) a young man who is now 22 years old started using online support groups in 1997 when he was just 11 years of age. His mother encouraged him to seek support after he was diagnosed with Asperger syndrome. For children with disabilities who often have social skill deficits and are prone to social rejection, the virtual environment may offer a social context that does not accentuate their deficits, and provides a place where they are more likely to experience positive interactions with their peers. (Raskind, Margalit & Higgins, 2006) For Cameron this has certainly been the case. He first started using a supervised chat group called AS-Kids and his initial aim was to ‘find out info’ about autism and Asperger syndrome. Over time Cameron has joined online chat rooms using Internet Relay Chat accessed through a downloaded program installed on his computer. Cameron considers himself to have ‘grown up’ in these chat rooms and returns to the rooms on a daily basis to seek the support of his online friends and mentors. Cameron uses the chat room to talk about everyday issues and to share his interests with online friends. These online friendships have endured over time and are ones that Cameron and his mother consider to be pivotal in his development.
Merlin has been Cameron’s online friend and mentor for the past 11 years. Now aged in her fifties Merlin came to the internet looking for answers around the same time as Cameron. Merlin relays her initial experiences:
“When I realized that I may have Asperger Syndrome, I tried to get information from the local library. There were long waiting lists on the few books available, so I learned to use the internet by trial and many, many errors. I heard about AS in August, 1998 and was starting to explore the net a fortnight later. Mostly I went to personal pages and then found OzAutism [an email discussion list]. A few months later I started to chat.” (‘Merlin’, personal communication, June 12, 2009).
Merlin’s trial and error approach to internet meant that she had learnt a lot along the way and she soon found she was able seek and offer support and experience the benefits of growing friendships.
“I used to understand friendship as hard work. I now regard online friendships as fun and it is a constant pleasure to realize that there is a group of people who care about the good and bad things that happen to me. I also like knowing that sometimes I can help online friends in ways that I cannot help some of the people in my daily life because I do not really relate to the way they think and live.” (‘Merlin’, personal communication, June 12, 2009).
On recommending the internet as an option for adults with ASD looking for friendships Attwood (2007) reiterates much of what Finn (1999) put forward as rationale for people with disabilities adopting the internet as a social support tool. Attwood highlights the advantages of developing friendships over time without the distractions of extraneous social and sensory information. He also acknowledges that “genuine and long-lasting friendships can develop over the Internet based on shared experiences, interests and mutual support.”(Attwood, 2007, p. 87)
Sarah (pseudonym) a woman in her thirties with ASD, came to the internet in the year 2000 seeking support for social issues she was having. In the early 1990’s she was diagnosed with atypical autism but coming from a rural area had no access to support and intervention. Thinking that very few people shared her issues she began an internet search for ‘autism in Australia’ and found Tony’s site which lead her to contact him and to seek out others with a diagnosis. Sarah reports that she found a degree of social success online that she had never experienced ‘in real life’. She found that a lot of the social conventions required in face-to-face interactions could be bypassed on the internet and that people were more receptive to her ideas. This in turn served to build her confidence and sense of competence.
In discussing the social positioning of people on with disability Bowker and Tuffin (2007) state that online access offers alternative frameworks for positioning people with disabilities in the social world. They studied the dominant patterns in the textual outputs of people with disabilities online:
One dominant pattern, which was evident in the data, was the way people with disabilities were evaluated positively. This talk of positive subjectivity included the idea that many of the social and psychological barriers, which had formerly constrained independent demonstrations of ability, were eliminated online. Freed from such stigmatising negative judgements, online communication afforded people with disabilities a rare opportunity to exhibit their value (Bowker & Tuffin, 2007).
In the late 1990’s the web company Yahoo! developed its online groups application and specific Asperger and autism groups started to emerge. A number of Yahoo! based groups in Australia have played an important role in the development of the online ASD community. The pivotal role of Yahoo! Groups in the development of ASD identity has been acknowledged by Brownlow (2007) who used Yahoo! groups as a representative sample for her study of the online construction of the Autistic Individual. Groups discussing Autism spectrum Disorders and groups for individuals with ASD focussing on issues such as relationships, intimacy, sexuality, advocacy have attracted hundreds of members from around Australia and thousands of members worldwide. Tony, Merlin and Sarah have played substantial roles in bringing these groups into existence in Australia and maintaining them for almost ten years.
In 2005 Tony, Merlin and Sarah joined together and created an online discussion group aimed at combining their online efforts and advancing the issues of people with ASD who were using the internet. In the past four years they have continued to support each other and their community by taking action and creating national and international affiliations via the internet. Thus in due course the Autistic Self Advocacy Network of Australia evolved. Much of the work done by the original members parallels the work of many international advocates that pioneered the idea of an ‘autism culture’ online. With the advent of the internet, the major facilitator of communication for people with ASD, the evolution of a movement has occurred, a movement akin to the political movements of other minority groups (Davidson, 2007). The movement itself began with internet as a pivotal tool and its ongoing existence is facilitated by that tool, a tool that has been effective in removing social and communicative barriers for some individuals with severe impairments in these areas. Brownlow (2007) argues that the movement has also allowed people with ASD to construct an empowered identity which allows them to challenge expert views of people with autism and their abilities. As Merlin relates:
“My experience was that reading information about autism from professionals has often been very depressing. Many are very judgmental and present information from their observations, not our reality. The first time I felt any sense of hope for a better future was reading Tony Langdon’s site. It was a revelation to me that an Autistic could have a good life.” (‘Merlin’, personal communication, June 12, 2009).
Many individuals like Cameron described earlier continue use the internet as a daily tool for social interaction and it is for their benefit that individuals like Merlin, Tony and Sarah continue to advocate for the advancement of people with ASD whilst similarly benefitting from the support available online.
This paper has been a brief foray into the use of the internet as tool for overcoming the social and communication impairments posed by Autism Spectrum Disorder and demonstration of the lived evolution of a network enabled by the use of internet technology. The inventor of the World Wide Web Tim Berners-Lee intended it to be a social tool. There is little doubt that he recognised its potential but did he understand how liberating it may become for a group of people with social impairments. As demonstrated by the interviews and supporting literature the internet has enabled people with ASD to surpass barriers present in face-to-face communication and enabled them to find relationships that seem to be qualitatively different but equally as valuable as the relationships made by other individuals using face-to-face communication. These relationships have served to increase self-awareness and acceptance in individuals with ASD and allowed them to develop valued identities. Some individuals have chosen to use these relationships and valued identities to establish and further a movement that is beginning to have social, cultural and political implications for people with ASD. The use of the computer technology coupled with the internet has allowed people with ASD to challenge common perceptions held by professionals regarding their abilities and has allowed the articulation of previously unexpressed aspirations, ideals and values. Finally, the internet has offered a space, albeit virtual, for a group of people to belong to a community.
“Internet chat reinforced the understanding that most people have difficulties – but a peer group in which others have similar experiences gave me something that most people experience from early childhood – understanding.” (‘Merlin’, personal communication, June 12, 2009).