Autism is a condition that impacts the way a person “thinks, feels, interacts with others, and experiences their environment”, with an estimated one in 70 individuals falling somewhere on the spectrum (The Autism Spectrum Organisation of Australia, 2023). Autistic people have been oppressed for decades, the way this community present themselves is often seen as negative, as it doesn’t fit the blueprint that the neurotypical society deem as “right”. In a world where these people are punished for their unique perspectives on life, the autistic community searched for a space to call home, a space that they felt they belonged, could meet other likeminded people that would understand them wholeheartedly, and where they could exist authentically. The development of internet-based communication allowed for a comfortable world, where external stimulus was minimal, and the autistic community could connect. Tumblr, developed in 2007, became the platform of choice, with the website interface, the community of people and their input combining to allow for this marginalised community to truthfully present every aspect of themselves in a safe space, make friends, discover new information about the community and ultimately, find a space to belong.
We must firstly identify what constitutes a community to be able to highlight just how important Tumblr has become for autistic people. Wellman (2001) and Castells (2001) define communities to be “networks of interpersonal ties that provide sociability, support, information, a sense of belonging, and social identity” (in Delanty, 2018, p211). While a traditional model of community is rooted in geographical boundaries and physical closeness, the post-modern definition expands to cover the groups of people who gather in online spaces. Communities, because of the instant access to social settings created by internet-mediated-services, can exist between people who are thousands of kilometres apart, but have connected through shared experiences, values, and features. The instant contact that individuals can make with others across the world, the instant access to new and different ideas; the common understanding of community has been “liberated from the dense bonds” that once defined it (Lu & Hampton, 2017, in Hampton & Wellman, 2018). This concept is defined by Rainie & Wellman (2017) as networked individualism, the move from dense, local groups to “multiple, partial, often far-flung” communities online (in Hampton & Wellman, 2018). The group of autistic people on Tumblr constitutes a community. As we will further discuss, the autistic community on tumblr provides support, a sense of belonging and a feeling of identity amongst others. Tumblr became the chosen place for this community to gather not only because of the website’s interface, but the meaning that users gather from their interactions here.
Tumblr, developed by David Karp and released onto the world wide web in 2007, is a popular social media website that boasts 572,758,559 blogs as of April 2023 (Tumblr, 2023). The website describes itself very vaguely, claiming that “Tumblr is whatever you want it to be” and that “you’re the explorer. We’re just the map you all keep on making” (2023). The website allows for users to create accounts, publish their own blogs, and upload original content, but also allows users to “reblog” content from other users, a function that will “quote the original post by default and allow the reblogger to add additional comments” (Chang et al., 2014). While Tumblr offers a handful of features unique to the website, such as the “chat” and “quote” features, which allows users to “share quote or chat history from ichat or msn”, it also has an incredibly user-friendly interface. Icons on the dashboard, the homepage accumulating posts from all accounts a user follows, are bold, easy to read, and accompanied by icons. The website has focused on “the utility and accessibility of its features”, as described by Carr (2013) (in Kirkconnell, 2019). While Tumblr was not specifically designed with the neurodivergent community in mind, it has become a paramount meeting place for this community, partly due to the ease of access for users.
Society has marginalised the autistic community for as long as society itself has existed, the stereotype of an autistic person itself is riddled with prejudice. Hollywood productions have sensationalised what having autism is like, with neurotypical actors portraying a poor depiction of who an autistic person really is. These high-budget performances, brimming with either excessive idealism or rooted in a negative ideology of neurodiversity, are not reflective of the truth of an autistic person. Autistic people are too often described to be “emotionally disturbed, oppositional, lazy, or stupid” (Robinson, 2020). Descriptions like these are inherently negative and damaging. It creates a sense of otherness that separates the neurodivergent community from the neurotypical community, the sense of belonging in real life is difficult for many autistic people because of this division. As mentioned previously, autism affects how a person interacts with others and processes their environment. The way different stimuli affect autistic people, whether physically or verbally, can present in mannerisms such as “stimming” (self-stimulation), hypersensitivity, avoidance of eye contact, camouflaging, and more. Chloé Hayden, Australian actress and disability advocate, describes stimming to cope with the pain of overstimulation, and that the regular reaction of “distaste, disgust and discomfort” (2022, p47) is entrenched in society’s concern with anything outside of the “current understanding of ‘normal’” (2022, p48). Another familiar characteristic of autism is camouflaging, or masking. This strategy that is employed as a self-preservation technique by individuals and involves a person actively hiding aspects of their neurodivergence to “prevent others from seeing their social difficulties” (Hull, et al. 2017). This community feels so uncomfortable presenting authentically in a society catered towards neurotypicals, that individuals are actively suppressing their behaviours to appear more ‘normal’. Hayden mentions that while masking does assist in achieving a sense of belonging in society, “it ultimately becomes our demise” (2022, p66). Masking is an exhausting effort for any person, let alone a person who has to mindfully process information and carefully act out a response (Bargiela et al. 2016). Undoubtedly, any person having to exert so much energy for a simple conversation just to present in a way that fits a societal blueprint of ‘normal’, would look for alternative spaces for communication and belonging.
This new space was Tumblr. An online world of limitless potential, where autistic people were not faced with the same challenges that come with face-to-face interaction. An individual who may struggle with direct conversation for any number of reasons is able to create an account from the comfort of their own home. They can share as little or as much information about themselves as desired; their actions in real life have no impact on their Tumblr accounts and how their content is received. Posting and interacting on Tumblr is not instant, users have time to formulate responses to content, time that is not afforded to an individual in physical conversations. Users dictate who they interact with and the interactions that they have by following blogs that appeal to them, by choosing to engage in a discussion, or even by actively ignoring content on the website. The autistic community on Tumblr has become more than just a group of autistic people, this space fosters friendships, creativity, confidence, identity, and a sense of belonging; all things that constitute a community.
In a study conducted by Andrew Kirkconnell in 2019 that interviewed autistic Tumblr users, it was found that most of the issues that individuals had with communication in the physical world were often nullified. Users reported that being able to think about their responses to others, without the excessive stimulus from conversation, made Tumblr a wonderful place for the community. One user revealed that in the physical world, there were non-verbal, however, using Tumblr has allowed them to make connections that otherwise would not be possible (p42). Other users of this study reported that while they may not have joined Tumblr intending to find the autistic community present, they became involved after finding and becoming involved in discourse presented by this community of users after relating to what they see (p45). Most participants noted that the “negative impact of autism on their life was greater prior to their time on Tumblr” (p30). This community space not only has a tremendous impact on the individuals that comprise it, but on the wider narrative of the autistic identity.
A large part of discussion about autism is essentially damaging, and the autistic community on Tumblr use this platform to re-write the historical view on autism, from being damaging and life ruining to affirming the value in being autistic (Kirkconnell, 2019). Large corporations, namely Autism Speaks, spend millions of dollars annually spreading misinformation about autism, and spreading harmful sentiment about autistic people. Campaigns by this organisation include the 2009 “I Am Autism” video, which “characterised autism as a monster destroying lives and families” (Robinson, 2020), and the 2007 “Ransom Notes” campaign, had posters distributed with quotes such as “We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives” (Kaufman, 2007). The impact these hatred-fuelled attacks on the autistic community further reinforces the negative ideas that society has on autistic people. Chloé Hayden shared an album of infographic posts on her Instagram account on April 1st, 2023, providing a guide on “How you can actually support autistic people this April”, with the third slide dedicated to highlighting the negative impact Autism Speaks has on the autistic community. The calls the organisation out for their curative funding purposes and reveals that the organisation research prenatal testing to “eradicate autistic people”. The autistic community on Tumblr is first recorded to be active from 2007, when the Ransom Notes campaign was published. People were furious at the nature of these advertisements, claiming the goal of Autism Speaks to be “antithetical to neurodiversity” (Kirkconnell, 2019). The autistic community on Tumblr, while unfortunately linked to fighting against prejudice and unethical opinions of autism, is strongly associated with re-educating the greater public about what autism really is.
Tumblr has a website has truly made a world of change to the autistic community. Individuals who may have additional barriers preventing communication are afforded the chance to make friendships, share content, express themselves, and reform prominent ideology in comfort. The mechanics of Tumblr have created an interface accessible to all, and the autistic community have made a home here, where the stories told are authentic, the information disseminated is true, the understanding is mutual, and the support is immense. While there is no doubt that the harmful rhetoric about autism will continue, we must not stand by idle. Neurodiversity is a fact of life; it does not create this distinct category of ‘other’ that many try to push forward. We do not need acceptance of autism; we need understanding and support; we need more systems that remove barriers of communication. Chloe Hayden reminds us that “it is time to create a society that understands that diversity in all aspects of life is something that we need, and that we cannot progress without difference” (p19).
References
Autism Spectrum Org of Australia. (2023) “What is Autism?” https://www.autismspectrum.org.au/about-autism/what-is-autism
Bargiela, S., Steward, R. & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders. 46(1). 3281-3294.
Chang, Y., Tang, L., Inagaki, Y. & Liu, Y. (2014) What is Tumblr: a statistical overview and comparison. SIGKDD Explorations Newsletter. 16:1. https://doi.org/10.1145/2674026.2674030
Delanty, G. (2018). Virtual Community: Belonging as Communication. Routledge. https://doi.org/10.4324/9781315158259
Hampton, K. & Wellman, B. (2018). Lost and Saved … Again. The Moral Panic about the Loss of Community Takes Hold of Social Media. Contemporary Sociology. 47(6). 643-651. https://doi.org/10.1177/0094306118805415
Hayden, C. Different, Not Less. 2022. Murdoch Books.
Hull, L., Petrides, K., Allison, C., Smith, P., Baron-Sohen, S., Lai, M., & Mandy, W. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders. 47(1). 2519-2534.
Kaufman, J. 2007. “Ransom-Note Ads About Children’s Health Are Canceled”. New York Times. https://www.nytimes.com/2007/12/20/business/media/20child.html
Kirkconnell, A. 2019. “Where Everyone Waddles Like Me”: An examination of the autistic community on Tumblr.com. https://macsphere.mcmaster.ca/handle/11375/24989
Robinson, J. 2020. My Time With Autism Speaks. 10.1007/978-981-13-8437-0_16
Tumblr. “about” https://about.tumblr.com/
Hi L, The thing is the paper is mainly concentrated on the African continent particularly.If you make an analysis of…