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Communities and Web 2.0

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

This paper looks at the concepts of representation, virtual community, self-presentation and self-representation to argue that virtual communities on Wrong Planet and Aspie Central use website affordances to challenge professional representations of ASD and AS. It focuses on virtual autistic communities by focusing on the discussion forums on the websites Aspie Central and Wrong Planet. Overall, it finds that virtual communities can challenge professional representation where people with ASD and AS can freely speak out. This is evident in the websites which allow anyone to view discussions and use them (if they sign up).

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.


Reference List:

Gerald, D. (2018). Virtual community: Belonging as communication. In Community (3rd 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

19 replies on “Virtual communities challenging the professional representation of autism through website discussion forums”

Hi Bithiah,

What a great paper. It is super engaging and really outlines your points clearly.

I am not super familiar with autism so this was a very interesting read and topic for me. I think it is great that there are platforms out there that offer a safe place for people with autism to talk about their success and failures without the onlook of NT’s and away from the stereotypes of academic/medical opinion.

Are there other sites? Do you think that it would be beneficial for these sites to host meetings? Or is it the online factor, so being away from a face to face encounter, that makes them so effective?

I think that stereotypes are a tough concept. You can see where they come from though know there is nothing you can do to stop people thinking that way! I know there are beginning to be a few promotional campaigns to promote hiring people with disability. NOVA Employment for one which is encouraging people to ‘focus on ability’. (https://www.novaemployment.com.au/employers/?utm_source=ReachLocal&utm_medium=RLBranding&utm_campaign=SEMBranding&scid=325375&cid=446881&tc=Cj0KCQjwka_1BRCPARIsAMlUmEotO0HOkmIiVZ5Nd8CWI9IzOxgMKnd2p1YK1YC8CoiFXpkV1wY-TWIaAqqGEALw_wcB&rl_key=8df0cb6443d7b50e46316c7b280d5fac&kw=8687773&pub_cr_id=421780251045&dynamic_proxy=1&primary_serv=www.novaemployment.com.au&device=c&network=g&targetid=kwd-882625931248&loc_physical_ms=9071774&rl_track_landing_pages=1&rl_retarget=1)
Do you think more programs like this will help to further break down the stereotype’s associate with autism and other disabilities?

Hello Emily,

Thanks for the reply. Yes, it is great that people with autism are getting more of a say about themselves. Since, autism is a highly variable disability too, the more representations of autism from autistic people there are, the better our understanding of autism.

I do think there are other sites like Wrong Planet and Aspie Central. Parsloe (2015) mentioned that there are other online autistic communities. They did not specify any of the names though except Wrong Planet.

Hosting meetings via video chat may not be the most beneficial form of communication for most people with autism. Though, individuals with autism are diverse and some might not mind online video chats, text-based communication is easier because it gives them more time to respond and to think about what they want to say. Face to face communication requires individuals with autism to think a lot more about what they say, how they say it, and what body and facial expressions they use. Face to face also requires them to focus a lot more (than NTs) on the person/s talking to them and the verbal and non-verbal language they give off so they can provide an appropriate response to the person/s. This is very hard for people with autism since they tend to struggle with understanding and picking up on social cues and also communicating in a way that NTs can understand and respond too. Having to provide instantaneous responses is also another issue people with autism have difficulty with. As a result, face to face can be exhausting, stressful and confusing, which is why text is preferred.

It is as you said, you cannot stop people from forming stereotypes about a group of people. Breaking down stereotypes once they are formed is also difficult. I actually do not think programs like NOVA could further break down stereotypes for autism and other disabilities. This is because, programs like this which have a smaller web presence won’t be as visible to everyone and businesses than websites or programs with connections to other social networks. And while these programs may provide testimonies that could act as positive autism and disability representations, we must also consider that because of pre-existing stereotypes, businesses may avoid these programs altogether, meaning these representations may never get read.
~Bithiah

Reference List:
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

I would also like to add that although, I do argue that the open visibility of Wrong Planet and Aspie Central increases the exposure of autism representation, like the program you cited, Wrong Planet also lacks the larger web presence that would be helpful to breaking down stereotypes. Aspie Central does have a Facebook and Twitter page so it has more potential for people to access, openly view and interact with its website and discussion forum. Overall, I do think it would be essential to Wrong Planet and to any programs or websites that campaign or support autism (and other disabilities) to increase their web presence so people can gain more awareness for these kinds of websites and programs and have more exposure to the representations these websites and programs provide.
~Bithiah

Hi Bithiah,

It is great then that these sites are taking the fore front on creating spaces for people with autism to freely socialise without the stress that comes with interactions in the offline world.

I think that with more exposure and testimonies programs like NOVA could help with breaking down the stigma though it wont be an easy or quick journey to get there! And unfortunately I don’t think that it will ever be completely gone. Though I think that you are wrong in saying that programs like NOVA don’t have as great a reach. I heard about NOVA on the radio a few times and I have always thought about it. While I am not an ideal target as I am not in a position to hire anyone it does have a good marketing program behind it. Perhaps if NOVA and Wrong Planet or Aspie Central could work together on how they can compliment each others affordances and perhaps allow people hiring to see that the stereotypes are not always the entire truth.

Hey Emily,

That’s good to hear, thank you. At the time of your first response, I had never heard of them and they aren’t in my local area or anywhere in the state of Queensland. It does look like they do have some social media presence, I just didn’t directly look them up on Google, I tried searching for social media accounts on their website instead; I couldn’t find anything and it was overwhelming.

I do agree with what you’ve said about NOVA, Wrong Planet and Aspie Central. If NOVA can work with these websites to hire and showcase their testimonies directly from these online communities, it can act as a bridge for outsiders to see more of these websites and their online communities, as these online communities can bridge outsiders to NOVA employment.

Thank you for pointing that out.

~Bithiah

Hi Bithiah,

I thought this paper was fabulous! It was a topic I did not have a lot of knowledge on and was very pleased that you had written for such an audience, which allowed me to gain an understanding about online communities for those with ASD and AS.
The concept of these forums not only allowing sharing and connections to foster between those with autism, but as being a place of education for those without is fascinating.
My own paper looked at feminist communities online, and I found myself drawing parallels with the ideas of not only looking to share experiences and make connections in an online community, but also looking to shed a stigma or common judgement made by society. That stigma being seen as different or a burden due to having a disorder for those with autism, and for feminists, being viewed as angry and man-haters.
Not only has the ease of participating in a community online allowed people with autism to connect and share, but it being the perfect medium, as you stated that those with autism found written communication less confronting than face to face conversations.
Excellent paper once again, I thoroughly enjoyed learning about something new and important!

Hello Georgia,

Thank you for your reply. Autism is a very poorly understood disability and so I think that is why many may rely on the experts to bridge the gap in their understanding of this disability.

The Internet certainly has given women, feminists and especially those with autism the ability to speak out in a way they could not previously (Gerald, 2018). Furthermore, the online communities of marginalized groups are more visible and open to the public than they used to be (Gerald, 2018). While this means more people in society can gain more exposure to these groups, there are pitfalls. For example, while online communities of ASD and AS can shed light on stigma and judgment just as the feminist communities online do, the increasing visibility of discussions means any discussion (positive or negative) could sway the public’s opinion of that community/communities. This could be why many feminists have a hard time dealing with the harsh stereotypes of always being angry and man-hating. The representation that comes from one person ends up creating assumptions and stereotypes for a whole community/communities. However, to me, this is why the online communities of feminists and those with ASD and AS are important. If one individual can influence public opinion, imagine how much opinion could change with groups of individuals? It will be interesting to see how societal ideas and assumptions about autism, feminism and even women’s rights change over time.
~Bithiah

Reference List:
Gerald, D. (2018). Virtual Community: Belonging as communication. In Community (Third edition). New York: Routledge.

Hi Bithiah,

I really enjoyed reading your paper, thank you. You clearly demonstrate the way in which Web 2.0 technologies have strengthened ASD and AS communities.

I imagine that before sites like Wrong Planet and Aspie Central existed that people with ASD and AS were very geographically limited when looking for and interacting with other members of the community. Do you know how these communities interacted before Web 2.0 technologies existed?

You’ve made a strong argument for how these sites can challenge the professional representation of these communities. In the process of providing members of ASD and AS communities with a safe forum to self-represent, they are also creating an important resource for educating the NT community.

Thanks for such an interesting read!
Anna

Hey Anna,

Thank you for the reply. Yes, I do agree that ASD and AS communities are resources for education to NTs. The online communities I mention not only are visible and open for people to learn, but help to broaden people’s ideas about autism, which is important considering autism is highly variable.

In regard to your question, it is possible that some communities would have existed and had members that interacted with each other before Web 2.0. technologies. For example, there would have been communities that formed within or around disability support organisations like Endeavour Foundation. In particular, parents or carers would have looked for these kinds of organisations to get assistance and support for their child and themselves. However, what interactions the ASD and AS would have performed before Web 2.0. is unknown. It is not something I can provide a definite answer too. However, I would assume that face-to-face would be used to an extent by some if they were interested, comfortable and able to do so. They could also have used sign language, email, and written letters to one another. What interactions do you think they would have done?

~Bithiah

Hi Bithiah,

Without knowing a lot about these communities, I imagine that opportunities for interaction would have been a lot more limited as geographical restrictions would have meant that it would have been much harder for members of the AD and ASD communities to find each other. So not only has Web 2.0 created new ways for members of these communities to interact with each other, it has also people find each other, no matter where they are located. I think it’s a great example of Web 2.0 being used to build communities.

Thanks,
Anna

Hi Bithiah,

I am ashamed to say that I do not know much about ASD and your paper has provided me with a lot of new information and resources for me to look into. I see that there is a valuable argument in this paper that contributes to further knowledge but I feel like you need more sources to back up your statements regarding the ASD experience.

I would also like to explore the concept of communities in these forums surrounding special interests, would you say communities built around special interests are stronger on these sites – compared to other special interest forums – due to the trait of hyperfocus on certain subjects?

My other question is how do you think the representation of persons with ASD in popular media (TV in particular) stands up against the self representation on Aspie Central and Wrong Planet? Do you think the discussions within the communities are changing the way ASD is represented in mainstream media?

Thanks for writing this paper,

Stephanie Cheng

Hey Stephanie,

Thank you for your reply and feedback.

In my argument where I discuss special interests, I make mention that people use their experiences relating to special interests and their hyperfocus traits or the discussions on the sites about special interests to provide positive representations. However, this doesn’t mean every person with ASD or AS uses Wrong Planet or Aspie Central for special interests alone. While special interests are mentioned, the point of Wrong Planet (and Aspie Central) was to facilitate a safe space for those with ASD or AS to come together and discuss their experiences and express their ideas, opinions, and issues with society. The focus on these sites is quite broad.

Therefore, I would argue that communities that form based on special interests alone, like a particular anime or anime character on Reddit might not be as big as communities on Wrong Planet and Aspie Central but can be stronger since these communities form for a very specific and shared purpose. While conflict can occur within any community, communities born from a very specific purpose have less room for ideas or experiences that occur more broadly and therefore, little room for diversity of opinions. On the other hand, Wrong Planet and Aspie Central provide more broad topics and leave room for diverse opinions, ideas, and experiences. Since communities tend to attract like-minded individuals, I believe this further reinforces this.

Now, while the hyperfocus trait does allow individuals to fixate on a narrow and deep interest, other traits may influence whether they participate in communities or not. However, making the assumption that some people with ASD and AS pursue socialization for the purpose of their special interests, I would argue that they may directly look up the topic of their interest and find online communities that focus specifically on that interest rather than go directly to sites like Wrong Planet or Aspie Central. If they wanted to pursue information and social exchange more broadly, they might look up and engage in Wrong Planet or Aspie Central instead. This fits in line with the idea of networked individualism. That people switch between different networks to suit their own individual needs, whether that be information, connection, socialization, etc. (Kendall, 2011). Would you say, you agree? Disagree?

In relation to popular culture, while I stand firm on my argument in my paper about online forums challenging professional autistic representation, this does not mean these challenges are stronger or more spreadable in comparison to popular culture. Which is why representations in mainstream media are crucial. This is true, when we consider that media representations of autism rarely meet the mark with a few notable exceptions: Big Bang Theory (Sheldon Cooper) and The Accountant. Even then, the diversity in autism can make these representations seem restrictive or unrealistic. This is why self-representations on online autistic communities do scrutinise mainstream media representations, since people on Wrong Planet and Aspie Central are aware of how important representation is. However, in saying this, I cannot provide a concrete answer as to whether online communities have helped to change representations on mainstream media.

What do you think about this? Do you think online communities have facilitated changes to mainstream representation?

~Bithiah

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

Hi Bithiah,

Thank you for your reply.

I do agree that people would search for their area of interest and engage in discussions rather that starting their search at Wrong Planet or Aspie Central but I wonder if many people with ASD engage in different ways depending on the platform they are on. Do you think the ‘setting’ of these discussion boards determines how someone writes comments? Further to that do you think the assumption that people commenting on Aspie Central and Wrong Planet have ASD, or are closely related to someone with ASD, provides an environment where a commentator is comfortable writing as they are – rather than adopting an NT persona? I ask about the possibility of adopting a persona purely based on my research into young people and how they use online discussions to experiment with various personas (Subrahmanyam & Šmahel, 2011) so please forgive me if my lack of knowledge regarding persons with ASD has led me to make an erroneous assumption.

As for mainstream media representations of people with ASD I would like to think that communities like Wrong Planet and Aspie Central provides a researcher or junior producer an insight that was not available before. Do you think this could explain the recent improvement in media representations?

Thanks,

Stephanie

Subrahmanyam K., Šmahel D. (2011). Constructing Identity Online: Identity Exploration and Self-Presentation. In: Digital Youth. Advancing Responsible Adolescent Development. Springer, New York, NY

Hello again Stephanie,

Does the setting of these discussion boards determine how someone writes comments? Yes, I would say it does. For Wrong Planet, the threads are set up so everyone writes their discussions in the boards their discussion is about (e.g. LGBT topics are written in the LGBT board). Notably, Wrong Planet is a site for English speakers and does not have any discussion boards for Indigenous people. So the Wrong Planet forum does prevent certain topics from being talked about more openly. While anyone can technically write anything they want to a thread, a moderator can delete these comments if they are not in the proper board or are not appropriate to that particular thread.
For Aspie Central, there is no neat boards. Everyone can create a thread from one single board about any random topic (e.g. stories about work, asking for advice about relationships, etc. can all appear in the same board). However, like Wrong Planet certain identities may not be welcomed openly or be perceived to be welcomed by the online community. This is because, Aspie Central doesn’t provide an indication that the Indigenous, LGBT, and other marginalized groups are welcome and the community will work to fight against discrimination and prejudice. I think this puts the focus of topics in general towards AS issues and experiences with little focus on other identities the person may have.

Moving onward, on Aspie Central and Wrong Planet it is generally assumed that those using these sites have autism but I have seen some people on Aspie Central who say they are NT and have ASD or AS relatives. Aside from a few NT users, many will ‘perform’ autism. That is, use their own experiences and ideas about autism and autistic symptoms to inform and prove to their community that they have autism (Parsloe, 2015). Parsloe (2015) and Sarrett (2016) have mentioned that some users may be perceived to not be autistic enough to some community members, which is why many will use their experiences and the symptoms of autism to back up their claims. While, Wrong Planet and Aspie Central welcome anyone, there is a need to prove themselves. There is no pressure to be NT at all but rather to 1) conform to the community’s standard of autism or 2) challenge it with proof. Even within these communities, members may challenge each other’s ideas and opinions about autism. This is consistent with research from Kendall (2011) about internal conflict within communities making communities either 1) break up/fall out or 2) become stronger and more cohesive.

In regard to mainstream media representation I would say yes, because research into autism in recent years has started to focus more on autistic people’s experiences, attitudes and perceptions about themselves, society, and professionals rather than just the professionals [examples- Giles (2014), Parsloe (2015), Parsloe & Babrow (2016), Sarrett (2016)]. Sometimes the media may use research and academic ideas in their narratives, so it is possible that ideas captured from these communities via Giles (2014), Parsloe (2015), Parsloe and Babrow (2016), and Sarrett (2016) amongst others could have been used. At the same time, by looking at this research, a producer may decide to look at these online communities for themselves and use ideas from them in their own works. Furthermore, while I do argue that those on Wrong Planet and Aspie Central are trying to challenge professional representations, it seems researchers are starting to focus their research on these communities, therefore allowing these representations to be shown within research and in extension to society.

~Bithiah

Reference List:
Giles, D.C. (2014). DSM-V is taking away our identity: The reaction of the online community to the proposed changes in the diagnosis of Asperger’s disorder. Health, 18(2), 179-195. https://doi-org.dbgw.lis.curtin.edu.au/10.1177/1363459313488006
Kendall, L. (2011). Community and the Internet. In M. Consalvo, & C. Ess (eds.), The Handbook of Internet Studies. Blackwell Publishing Ltd.
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
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

Hi Bithiah,

Through your research, you have provided a very insightful paper on a topic that rarely makes the headlines. Thanks for bringing awareness about autism and how those living with the condition are finding their voice in online communities.

Did you find that people on the spectrum in online communities felt it was necessary to disclose their condition up front to stop neurotypicals picking on them or they would rather not? Also, did you find that autistic members of the virtual communities favoured pseudonymity or real identities?

A good take-away from your argument is that we all belong together in the human race and our differences are our strength.

Good read and well done!

Bayayi

Hi Bayayi,

Thank you for your response. Yes, autism is a topic that doesn’t make headlights often and I find when it does appear it usually is about the parents and their struggles with raising a child with ASD. While it is understandable that parents may struggle at times to relate to their child and not always be sure what to do [and that is ok to admit too], these are the only narratives I have ever seen appear on TV programs like A Current Affair. While I do not explore mainstream media representations about autism in my paper, obviously the representations on online communities are not only important to challenging professional representation but also mainstream media representation. Although, as I stated with Stephanie above, I am not too sure how much of a challenge online community representations of autism pose to mainstream media representation right now. Have you ever come across any mainstream media representations of autism?

In regard to your question about pseudonymity, most users on Wrong Planet and Aspie Central tend to use pseudonymity rather than real names and do not use real faces as their profile pictures. There are some users that appear to use pictures of real life people and a full real name. I would say the reason most would use pseudonymity is because if they use their real name, they could be looked up by others within these online communities and outsiders and used to find other social media accounts and networks these people use online. Since, people can easily search you up online, pseudonymity is handy in avoiding context collapse; difficulty in self-presenting depending on your audience and environment (Marwick, 2012). Self-presentation is something we do all the time (e.g. family versus friends) (Marwick, 2012). This can be difficult to do online when you can be easily looked up by others, which is why pseudonymity is used.

Moving onto your question about disclosure, on Wrong Planet and Aspie Central people may freely disclose their autism, since those are their safe spaces. Some even go further and include their autistic identity on their profile. However, I do not think they would do the same in person since some on Wrong Planet report fear of discrimination or loss of future job opportunities and employment because of their autism (Sarrett, 2016). This is why, online community representations are really important, because if we can change people’s ideas and assumptions about autism, people with autism may be more open to disclosure in the future and may not have to worry as much as they do now about discrimination, losing work opportunities and employment. At the same time, we should also consider, that disclosure may not always be necessary. People with ASD and AS may choose to disclose or not disclose for a range reasons other than discrimination, employment, and job opportunities.

Since, people may sometimes have preconceived ideas and assumptions about autism, disclosure of someone’s autism may lead them to be questioned about if they actually have it or not. While at the same time, disclosure could challenge these ideas and assumptions. Thinking about this and pseudonymity, what is your opinion of autism disclosure and the use of pseudonymity?

~Bithiah

Reference List:
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.
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

Hi Bithiah!
I was really excited to read your paper as my brothers are all on the spectrum.
It was great that you examined two case studies to evidence what you were saying. I also feel that communities for connection is a great topic, and you picked case studies to compliment it wonderfully.
I liked how you pointed out that the autism community discusses the positives as well as the negatives of their diagnoses. I believe that communities can be so important with positive identity reinforcement for those who would not get validation anywhere else. You can see that in the show Atypical, where the main character joins a group of other individuals with autism, and sees that there are people like him.
I also enjoyed how you outlined how to interact on these sites. It might have been interesting to see a few screengrabs to know what they look like.
Are these online communities of Wrong Planet and Aspie Central moderated at all? Are there admins who look after the boards – just in case incorrect or not factual information is posted? Or how would they deal with harassment?
I ask because of something I discussed in my draft paper (sadly not my final) called Autcraft, which is a Minecraft server for children on the spectrum and their parents. It’s a safe space for them, and has a vetting process to protect the users. It has done great things for these kids’ sense of community and development of social skills. Here’s the link if you wanted to read more about it https://kateringland.com/wp-content/uploads/2019/03/iConf_Ringland_cameraReady.pdf
Do you also think that these boards help the users develop social skills and also interact outside of the sites (i.e. becoming friends on Facebook)?

Great read! Thank you for your amazing contribution.
Anne-Marie

Hi Anne-Marie,

Thank you for responding. Yes, it can be hard to not feel alone when there are hardly any places that provide validation. It is great that there are online communities for those with ASD and AS.

I do appreciate your feedback. I cannot provide screenshots at this point but I can provide a link to the websites and their forums for you to take a look (if you would like):
Wrong Planet [Website]- https://wrongplanet.net/
[Forums]- https://wrongplanet.net/forums/
Aspie Central (The forum has been renamed to Asperger’s and Autism Forums)
[Forums]- https://www.autismforums.com/

Understandably, having a site filled with false information cannot be good for facilitating accurate representations of autism.

At the time I was looking through Aspie Central, I couldn’t find any information about moderation, so I am unsure. However, Wrong Planet does have a moderation discussion thread called MODERATOR ATTENTION: How To Get Help When You Need It, where people can post discussions reporting spam, inappropriate content, etc. People can also privately message an active moderator for concerning member behaviour like harassment and the violation of website rules. From what I can tell, neither of these sites have anything about reporting false information. For representation as you can imagine, this means there won’t always 100% of the time be an accurate representation of autism coming from everyone on these online communities, especially since anyone can use the public forums (Wrong Planet) and sign up and become a member for free without any limits. However, we must also consider that these communities are open so those with autism can come freely and be welcomed without being questioned, since some are proficient at ‘masking’ (hiding symptoms) and may be mistaken for NTs (Parsloe and Babrow, 2016).

With regard to your question about boards helping users develop social skills, I do agree that it can provide opportunity for one to learn how to communicate and socialize with others, which is an important experience. In my paper, I mention that people engaging in their special interests are able to better communicate on these sites. Discussing this further, I think these boards can help others to learn to communicate their desires, their needs and wants, their interests and feelings in a clear and concise manner. Being able to communicate these things is essential to living and getting the best out of life as one possibly can (e.g. communicating your medical and psychological needs with a doctor). However, there are also social skills that cannot be taught or understood in an online setting as easily or at all as it could in-person (e.g. picking up sarcasm/sarcastic tones, body language, facial expressions). So, the answer is yes and no. It depends on the type of social and communication skill.

Moving onto interactions outside of Wrong Planet and Aspie Central, it is possible for people with autism to engage in social media and other networks outside these sites. As I mentioned to Stephanie, people with ASD or AS can engage in communities that were formed for specific purposes (e.g. special interests). They can interact wherever they like and feel comfortable. However, it is important to remember that the reason people may use Wrong Planet or Aspie Central is because they do not feel safe talking about or expressing their autism outside of these sites. Therefore, could people with ASD and AS interact with each other outside these sites on social media like Facebook? Yes, but it depends on the reason they use Facebook to begin with and what identity they have constructed for themselves on Facebook. If their identity on Facebook is different from their identity on Wrong Planet or Aspie Central, they might not interact with their community members on Facebook to avoid context collapse. However, this will not be the case for everyone with ASD and AS since they may engage in different networks for different reasons. For example, someone may use Facebook as a site to talk with friends and may want to be friends with another on Wrong Planet, therefore they would add the person they want to befriend on Facebook.

With all this in mind, what is your opinion, on online communities and moderation? Do you think sites need more or less moderation? Also, what interactions do you think those with ASD and AS may do outside of Wrong Planet and Aspie Central?

Thanks again for the reply and the link to that article.

~Bithiah

Reference List:
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

Hi Bithiah,

Excellent work on your topic an insight and fascinating paper you have chosen to write for the conference. I liked the way you introduced your main points it was easy to follow and examples were good. Well done on the research of the topic and raising more awareness. I knew a little about autism but after reading your paper I have a better understanding and thoroughly enjoyed learning about your choice of topic.
Do you think autism could be spoken about more in future for people who aren’t familiar to understand its significance.

Kaye

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