Virtual communities challenging the professional representation of autism through website discussion forums

Introduction:

Websites like Aspie Central and Wrong Planet formed online communities for those with autism to connect together so they could share their stories and experiences, express their desire for change, and represent and support one another (Gerald, 2018; Kendall, 2011; Parsloe, 2015; Sarrett, 2016). In particular, people from these communities have voiced their frustrations at the current autism discourse and have aspired to change it and the way people treat them by representing themselves (Parsloe, 2015; Parsloe & Babrow, 2016; Sarrett, 2016). Since people with Autism Spectrum Disorder (ASD) and the former Asperger’s Syndrome (AS) preference the written word and feel less anxious using online communication, it is no surprise that in recent years they have taken up using sites on the Web 2.0. like Wrong Planet and Aspie Central to do this (Jordon & Caldwell, 2012; Masschelein & Goidsenhoven, 2016). While this is straightforward, we are still wondering: what is the current autism discourse? And how do people with ASD and AS use Wrong Planet and Aspie Central to challenge it?  This question is answered by looking at a brief overview of professional representation on autism as well as the following concepts used on the websites Wrong Planet and Aspie Central: representation, the concept of virtual communities, virtual communities and discussion forums, and using discussion forums to self-represent and self-present. In doing so, it will prove the argument that virtual communities on Wrong Planet and Aspie Central use website affordances to challenge professional representations of ASD and AS.  

Why community? The discontentment behind the professional representation of autism:

To understand why those with autism may use the online communities within Wrong Planet and Aspie Central we must look at the reasoning behind the development of the websites that host these communities.

Medical, health and academic professionals play a big role in the diagnosis and representation of autism to neurotypicals [NT] (people not on the Autism Spectrum) (Sarrett, 2016). This is especially the case where the representations of these professionals create assumptions and stigmas which are adopted by those in society (Parsloe, 2015; Sarrett, 2016). For example, members on Wrong Planet and Aspie Central have expressed that they experience misunderstanding and mistreatment from society because they are viewed as ‘abnormal’ (Parsloe, 2015; Parsloe & Babrow, 2016; Sarrett, 2016). Many want society to be accepting and accommodating to autism but instead society treats it poorly because it is a ‘disorder’ with ‘abnormal’ behaviour, communication, coping mechanisms and thought that needs to be fixed (Jordon & Caldwell-Harris 2012; Parsloe, 2015; Parsloe & Babrow, 2016; Sarrett, 2016). However, community members from Aspie Central have expressed their belief that their differences in communication, thought and behaviour are not always inherently bad and can in fact be beneficial (Parsloe, 2015). They further express this by highlighting the benefits of some of their symptoms such as: hyperfocus and logical approaches to problem-solving (Parsloe, 2015). With professional representation playing such a significant role, we can understand why some Wrong Planet and Aspie Central community members have voiced their resentment and distrust of the medical, health and academic professions (Sarrett, 2016).

Because of professional representations, those on these websites are trying to convince us that the way we see them affects their ability to live, to work, to maintain relationships and to cope with every-day stresses (Parsloe, 2015; Sarrett, 2016). They want to show us who they are, rather than what we think they are (Masschelein & Goidsenhoven, 2016; Parsloe, 2015; Sarrett, 2016). They want to be seen as people who have unique ways of thinking, communicating and behaving that can benefit society rather than people who burden society because they have a disability (Parsloe, 2015; Sarrett, 2016). Thus, Wrong Planet and Aspie Central were born out of a need for self-advocacy and connection with those who understand the autistic experience (Kendall, 2011; Gerald, 2018; Masschelein & Goidsenhoven, 2016; Parsloe, 2015; Sarrett, 2016). These websites are now online communities where people with ASD and AS can speak out against one-sided representations while sharing their own ideas, experiences and special interests in a safe environment (Masschelein & Goidsenhoven, 2016; Parsloe, 2015; Sarrett, 2016).

Facilitating representation on Wrong Planet and Aspie Central:

Now that we have a brief understanding of why people with ASD and AS are using Wrong Planet and Aspie Central, we will now look at 1) what representation is and how it can occur on websites; 2) what virtual communities are; 3) how virtual communities use website discussion forums to provide opportunities for representation; 4) how individuals use self-presentation and self-representation to challenge professional representations.

What is representation?

Representation is taking a particular identity and portraying ideas and assumptions about that identity to someone (good or bad) (Marwick, 2012). It is important to the lives of people with autism since representations can produce assumptions, stereotypes and attitudes about a group of people who relate to the identity being represented (Marwick, 2012; Parsloe, 2015). For example, a representation within Wrong Planet or Aspie Central can be any discussion that goes on within either website, and the discussions can include narratives, debates and opinions that imply certain ideas and assumptions about autism (Marwick, 2012; Parsloe & Babrow, 2016). Therefore, because discussions are representations formed by these online communities and the websites these online communities appear on are openly visible to outsiders, they have the ability to portray a representation of autism to anyone on the web, influencing assumptions made from it (Marwick, 2012; Pearson, 2009). This is important since this openness facilitated by Wrong Planet and Aspie Central allows those from all over the web to see representations that are made on these websites (Pearson, 2009), providing the means to broaden people’s ideas and opinions about autism and even lead people to question current ideas and assumptions brought on by professional representations.

What are virtual communities?

Wrong Planet and Aspie Central act as ‘virtual communities’ for people with ASD and AS. That is, they provide spaces where individuals come together because of shared interests (e.g. hobbies, experiences, identity) or goals (e.g. agency, change, advocacy) and interact with each other via communication and social medias (Kendall, 2011; Porter, 2015; Udo & Marcus, 2012). According to Sarrett (2016), the website Wrong Planet was founded to act as an online discussion forum where those with ASD and AS, dissatisfied with the mistreatment in their every-day lives gathered together to connect with like-minded people in a safe environment (Gerald, 2018). It became a space for those struggling to cope and understand NT life to interact with each other about their special interests, opinions, experiences, desires and general life (Jordon & Caldwell-Harris, 2012; Sarrett, 2016). Parsloe (2015) also explains a similar scenario for Aspie Central where individuals with AS use the website with its discussion forum to reclaim their identity and sense of normalcy by using the site’s discussion forums to tell their experiences, express special interests, discuss symptoms and vent about frustrations toward NT society. Overall, because of the common interests of AS/ASD identity, experiences, special interests and a shared desire for change to representation and treatment, we see that websites like Wrong Planet and Aspie Central have provided the means to bring people with ASD and AS together online (Kendall, 2011).

Virtual communities, discussion forums and representation

The way in which the virtual communities on these websites are able to provide opportunities for representations is very straightforward. For example, both websites have a discussion forum, which act as the space for their respective virtual community and their members to interact. On either website, members (those who have a profile on the website) only need to start a new discussion thread or reply to a previous one to interact or seek out an interaction with others. On Wrong Planet, threads are divided by topic, so one does not get confused as to where to go to ask a specific question, participate in a debate, or engage in discussions about a particular topic or special interest. From there, people with ASD and AS tend to use particular experiences they have, symptoms they possess, issues they have encountered and any opinions about autism and society in general to engage in a variety of discussions about a number of topics (Parsloe, 2015; Parsloe & Babrow, 2016; Sarrett, 2016). Special interests, which are a key part of autism are also enthusiastically discussed in discussion threads that focus on for example: video games (Jordon & Caldwell-Harris, 2012). From all these discussions comes representation.

Since, representation is about the portrayal of ideas and assumptions about a particular identity, anything that produces an idea or assumption about an identity can be considered a representation (Marwick, 2012). This means opinions, ideas, interactions and narratives that are expressed on Wrong Planet as well as Aspie Central are forms of representation (Marwick, 2012). For example, some members with AS on Aspie Central used their symptoms in a discussion thread to explain how they positively contribute to society (Parsloe, 2015). These symptoms included the ability to hyperfocus on a task or interest and their more logical and unemotional approach to problem solving (Parsloe, 2015). Furthermore, they used these representations to imply that they can outperform and solve problems quicker than NTs in the area they focus on (Parsloe, 2015). Looking further, they discuss how these symptoms and others are traceable in well-known historical figures such as Einstein, reclaiming him as an aspie (an identity for those with AS) and using him as an example of how those with AS can be successful without fitting within NT norms (Parsloe, 2015; Parsloe & Babrow, 2016). By using the discussion threads to voice their ideas and opinions about their symptoms and cite historical figures as examples of AS achievement, they go against the idea that symptoms are inherently burdensome to society. From this they depict a representation of autism that makes symptoms beneficial, therefore challenging professional representations relating to autistic symptoms.

Self-representing & self-presenting autism

The ability to start your own discussion or reply to another, gives those on Wrong Planet and Aspie Central the chance to show their identity as a person with ASD or AS (Marwick, 2012). On Wrong Planet members tend to show this through storytelling their own experiences about their autism to their virtual community, and ultimately the web since it is openly visible (Marwick, 2012; Parsloe & Babrow, 2016; Sarrett, 2016). By providing particular experiences to their online community, they self-represent (represent themselves) to express their own ideas and assumptions about autism (Marwick, 2012; Parsloe, 2015; Parsloe & Babrow, 2016; Sarrett, 2016). For example, a person with ASD on Wrong Planet may talk about being bullied because they were socially awkward and had a hard time picking up on social cues [self-representation]. This social awkwardness could also be reflected in the way they handle replies on the discussion thread [self-presentation]. At the same time, this person may also highlight that despite the bullying, their autistic symptoms helped them to understand and solve problems quicker because they do not focus on the emotions that come with problems like their NT peers might (Parsloe, 2015). Generally, members on Wrong Planet and Aspie Central tend to use negative stories to point out flaws in NT society around the conceived notion of ‘normal’ while embracing the differences between autism and NT by talking positively about their symptoms (Parsloe, 2015; Parsloe & Babrow, 2016). For example, while one might indicate being made fun of for taking an active interest in a particular species of animal, they will still engage in their special interest and show others how their tendency to fixate on this interest has helped them cope, communicate and concentrate better (Jordon & Caldwell-Harris, 2012; Parsloe, 2015). When outsiders see members engaged in their special interests discussions and the strengths that come from that, they can see the benefit of them in society and the uniqueness in the individuals (Parsloe, 2015). Overall, by using these examples of self-representation and self-presentation to depict autism as natural differences, they indicate the unfair treatment towards differences and question the ‘disordered’ representation of autism produced by professionals.

Conclusion:

On the websites Wrong Planet and Aspie Central, the virtual communities that have formed use website affordances to challenge professional representations of ASD and AS. They have allowed the ideas, opinions, narratives and discussions of those with ASD and AS to be easily conducted through the creation and responses to discussion threads which are viewable by anyone across the web. Because of this affordance, members from both virtual communities have been able to gather together with their respective members, discussing their ideas, opinions, experiences and frustrations in safe spaces designed for them. By doing so and this being openly visible in the web, representations that challenge professional ones like 1) autism as natural differences and 2) autism symptoms as beneficial to society, emerge on the web and into society. Therefore, we can conclude that virtual communities on Wrong Planet and Aspie Central can use website affordances to challenge professional representation.

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Reference List:

Gerald, D. (2018). Virtual community: Belonging as communication. In Community (3^rd ed.). New York: Routledge.

Jordon, C.J., & Caldwell-Harris, C.L. (2012). Understanding differences in neurotypical and Autism Spectrum special interests through Internet forums. Intellectual and Developmental Disabilities, 50(5), 391-402. Retrieved from https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1288355519?accountid=10382

Kendall, L. (2011). Community and the Internet. In M. Consalvo, & C. Ess (eds.), The Handbook of Internet Studies. Blackwell Publishing Ltd.

Marwick, A. E. (2012). Online identity. In J. Hartley, J. Burgess, & A. Bruns (Eds.), A companion to new media dynamics (pp. 355–364). Chichester: John Wiley & Sons.

Masschelein, A., & Goidsenhoven, L.V. (2016). Posting autism: Online self-representation strategies in Tistje, a Flemish blog on Living on the Spectrum from the front row. In K. Ellis, & M. Kent (eds.), Disability and social media: Global perspectives. Routledge.

Parsloe, S.M. (2015). Discourses of disability, narratives of community: Reclaiming an autistic identity online. Journal of Applied Communication Research, 43(3), 336-356. Retrieved from https://doi-org.dbgw.lis.curtin.edu.au/10.1080/00909882.2015.1052829

Parsloe, S.M., & Babrow, A.S. (2016). Removal of Asperger’s syndrome from the DSM V: Community response to uncertainty. Health Communication, 31(4), 485-494. https://doi.org/10.1080/10410236.2014.968828

Pearson, E. (2009). All the World Wide Web’s a stage: The performance of identity in online social networks. First Monday, 14(3). Retrieved from https://firstmonday.org/article/view/2162/2127

Sarrett, J.C. (2016). Biocertification and neurodiversity: The role and implications of self-diagnosis in autistic communities. Neuroethics, 9(1), 23-36. https://doi.org/10.1007/s12152-016-9247-x

Udo, A., & Marcus, L. (2012). Social media and the re-evaluation of the terms ‘community’, ‘virtual community’ and ‘virtual identity’ as concepts of analysis. i-Manager’s Journal on Information Technology, 1(4). Retrieved from https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1473904381?accountid=10382