Abstract
Autism Spectrum Disorder is a neurodevelopmental disorder, characterised by social difficulties, repeated motor movements and perceived ‘strange’ behaviour by neurotypicals. It has historically been stigmatised, leading to a wide societal misunderstanding of it. Communities have utilised online spaces to cultivate groups on the topic that have continually advocated for societal understanding. These communities have provided spaces in which people with ASD can seek advice, share information and subvert stigma.
Introduction
Online communities are central to online advocacy. ASD is a historically misunderstood, mis- and underdiagnosed neurodevelopmental disorder. Society has placed damaging stigmas upon ASD that have led to autists being bullied, ostracised and overlooked. In the past, media outlets, institutions and diagnostic labels have demonised or shunned ASD, leading to a greater societal misunderstanding or fear of it. Social media has become an outlet for people with ASD, where communities have formed to both allow autists to engage in conersations for social connection and provide information that leads to a greater societal understanding of the disorder. On networks such as YouTube, advocates have created content that engages the wider community, spreads information and invites discussion. These communities have been monumental for the provision of social support that had been severely lacking. For people with ASD, social media has become an important space with many significant communities which simultaneously act as a safe place for autists to seek social support and spread information that removes stigma surrounding ASD.
What is Autism?
ASD is complex. There is no set of concrete symptoms as every autistic person presents differently depending on where they exist on the spectrum. ASD is a neurodevelopmental disorder that effects the brain – often characterised by deficits in social communicative abilities and repetition of sensory motor behaviours (Mittmann et al., 2023). Signs are often present by 3 years of age, diagnoses signify boys are four times more likely to have ASD than girls and diagnosis has always been challenging, due difficulty discerning whether an individual has ASD or another neurological disorder (Bakombo et al., 2023, p.1). Behavioural manifestations begin in the early years of development and are life-long, though the severity of these vary from person to person (Joon et al., 2021, p.1257). Parents often notice developmental issues in their children first, particularly with slower vocal development, behavioural issues or hyper fixation on certain toys (Aguiar & Pondé, 2020, p.151). A substantial portion of people with ASD are left undiagnosed through childhood, often because they do not have obvious symptoms (Mandy et al., 2018, p.549). These adults consistently report that prior to their diagnosis they had substantial flexibility, social and sensory issues, which was detrimental to their wellbeing as they were poorly supported and misunderstood (Mandy et al., 2018, p.550). Too often people are not diagnosed because ASD is not always obvious.
Societal Misconduct Regarding Social Support of People With ASD
Autistic behaviour has been recognised since ancient times, though it has only been in recent years that it has been recognised as ASD and understood as the complex spectrum it truly is (Joon et al., 2021, p.1257). Historically, it was described as schizoid psychopathy in 1925, renamed to autistic psychopathy in 1959 and often people with it were institutionalised and described as ‘abnormal’ (Joon et al., 2021). The newness of nuanced understanding of ASD means previous prejudices against it still linger in society. Psychopathy is inherently a negative descriptor, often attributed to murderers or other violent criminals, clinically diagnosable by observing manipulative and violent antisocial behaviour in an individual (Viding et al., 2014, p.1). As recently as 65 years ago, people with ASD were linked to this descriptor. As a result, ASD has been seen as frightening, shameful and wrong.
In terms of traditional mass media – such as tv shows and movies – ASD representation has detrimental to the health of autists through its blatant inaccuracy. In the past, media portrayals of ASD have been misleading and stigmatising, leading to a wide social misunderstanding of what it is and how it manifests. As they often already experience a lack of social understanding, autistic individuals were often excluded, rejected or discriminated against because wider society placed stigma on them (Bakombo et al., 2023, p.2). Media is a powerful platform in health discourse, and mass media has always been impactful in its ability to shape public perception of mental disorders. (Mittmann et al., 2023). For individuals without academic interest, media is the main source of information regarding autism, and often people take the characters used as a basis for what autism looks like without delving deeper (Mittmann et al., 2023, p.8010). After all, when someone is watching TV or movies, they are generally just seeking entertainment. The fact that representation reinforced negative stigmas around ASD has led to a societal understanding of autism that is simply untrue. In a 2023 study, Mittmann et al. analysed the portrayal of autism in movies and tv shows, concluding that they focused on negative and stigmatising aspects of ASD, failed to show the diversity of autistic people and focused on the extreme clinical levels of autism – usually by stereotypes such as the savant or the severely impaired. Therefore, unless an individual has exposure to autism outside of the media space, they are far more likely to see the portrayals on tv or in movies as truth. It is this effect that carried damaging stigmas about autists over time, and one social media advocates are trying to debase.
In the past, institutions have often been exclusionary of neurodivergent needs, with one of the most pressing examples being schools. This is because understanding of ASD was not good enough to cater to different needs, and often this is attributed to educators finding it difficult to reconcile that students who are academically able may struggle with the structural and social landscape of schools (Humphrey & Symes, 2010, p.78). When younger people with ASD are continuously exposed to environments that directly oppose their needs – whether that be sensory overload, social exclusion, absence of stimming or authorial struggles – they will naturally be set up to fail. Not only does this manifest in academic decline, but it also reflects in the self-worth of students who are not having their needs met and often being chastised for engaging in behaviours that help with emotional regulation (Humphrey & Symes, 2010, p.78).
Concerns lie with how people with ASD cope with mental health issues – such as depression – that may directly or indirectly be a result of societal stigmas and a lack of social support. Evidence shows that students with ASD are far more likely to experience bullying than their peers, leading to damaged self-esteem, mental health and social relationships, meaning their lack of protective networks put them at risk of further bullying. (Humphrey & Symes, 2010, p.86). The unfortunate truth is that many common autistic behaviours – stoic facial expressions, lowered empathy, overstimulation, meltdowns, etc. – are seen as antisocial and rude, affecting the person with ASD’s ability to integrate into the society built for neurotypicals, resulting in discrimination and ostracization (Joon et al., 2021, p.1258).
What these points show is repeated societal behaviour that both limits the social support people with ASD have access to and reinforces stigmatisation. Until recently, autism was related to psychopathy, represented negatively in media and not supported correctly in important institutions such as schools. This repeated societal behaviour meant having ASD was a shameful prospect, causing mental trauma to autists.
Online Communities
When comparing traditional media to social media, it is evident that tv and movies most heavily carry damaging stigmas and social media carries positive messaging (Mittmann, 2023, p.8013). The key difference is the authors of the information being published. A major limitation in autism representation is fiction media and newspaper articles often do not get input from people with ASD when creating content (Mittmann et al., 2023, p.8014). In contrast, social media content surrounding autism is often created by someone with ASD, immediately authenticating this content when compared to mass media portrayals (Mittmann et al., 2023, p.8014). Authenticity is important – lived experience of people with ASD is the most valuable source of information regarding ASD. Therefore, creators on social media spreading information and advocating for change in perception are the most important and authentic voices on the topic.
Social support is a human need – one which doesn’t exclude people with ASD despite the common misconception that they are innately antisocial. Not understanding social settings does not equate to disliking being social. What social media provides is an enormous scope of avenues for people with autism to seek connection. Advocacy organisations, such as Autism Speaks, are actively encouraging people with ASD to form online communities where they may share experiences, get advice and propel the continues social change regarding autism understanding (Saha & Agerwal, 2016, p.2). Wayman (2021), a blogger with ASD for Autism Speaks, argues that autists do not want to be antisocial, but struggle with typical social settings as they are overwhelming, confusing and generally not sensory-friendly, therefore social media offers communication that is easier. A study conducted by Saha & Agerwal (2016), found that their analysis of autism communities on Twitter displayed very high levels of social support, continued validation of everyday struggles, empathetic sharing of information and advice to help one another (for both parents of children with ASD and adults with ASD). As was previously discussed, support networks like this simply did not exist before social media. There were few outlets for accurate information or support, and autism was understood negatively due to consistent stigmatisation.
Recently, online advocates have pushed the conversation around neurodiversity in general, raising awareness and sharing knowledge at a high rate. YouTube, where 1.9 people visit the site each month, hosts many creators making content about ASD who wield a powerful tool in offering alternative ways to think about autism (Bakombo et al., 2023, p.2). YouTube is a great platform for advocacy as it continues to grow its users, but the free, 24/7 access makes the content produced easy to view and also create for (Bakombo et al., 2023, p.2). A study on 2019-2022 YouTube content by Bakombo et al. (2023) revealed that videos on ASD collectively had several key themes: ‘providing educational information, discussing personal experiences and displaying daily life’, with the most dominant being information providing. When discussing personal experience, creators would discuss the manifestations of their ASD (social difficulty), public perception (comments such as ‘you don’t look autistic’, bullying or being misunderstood as ‘rude’ or ‘weird’), and self-concept (self-perception before and after diagnosis) (Bakombo et al., p.7). These videos display a far more nuanced – and accurate – representation of ASD than what traditional media has previously shown. The Thought Spot is a YouTube channel with 113k subscribers and 129 videos, run by a woman with ASD named Irene. Her videos cover a wide range of topics from masking, self-regulation, finances and general everyday advice for other people on the spectrum. Her video entitled ‘Autism & trying to understand Social Media’ is an analysis on her own relationship with social media. She states that for people like her it is a space in which people can find others like them, and feel free to express themselves in a way that is difficult to do face-to-face, though that is dependent on how an individual uses it (N/A, 2023). She also touches on struggling with inauthenticity online, where people she knew didn’t match their online personas, stating social media can be good or bad depending on how one utilises it (N/A, 2023). At the end, she asks viewers a series of questions, asking them to engage in the comments about their own experiences online. Interestingly, despite her valid criticism of inauthenticity and online pressure, her channel and this video are their own mini online community. The comments section filled with anecdotes and conversation, further fuelling the trend of online autism advocacy. Her video is one example of many that show how online communities are offering social support for autists.
Ultimately, the communities online have begun the conversations that have contributed to the destigmatisation of ASD and changed diagnostic statistics. Because of higher awareness amongst clinicians and the public, the rate of diagnosis has been increasing since 2012 in both children and adults (Mittmann et al., 2023, Joon et al., 2021). It can only be positive that ASD is more readily recognised, understood and diagnosed. Online communities have been pivotal in the changing perspectives of the public, and the rising levels of social support that people with ASD receive.
Conclusion
In conclusion, online communities are incredibly important in destigmatising ASD and providing social support for people with ASD. Historically, autism understanding was limited, inaccurate and damaging. Traditional media was negligent in their portrayal of people with ASD, portraying autistic characters in stereotypical moulds that did not reflect the vast spectrum of autism. Alternatively, social media has hosted communities of creators and viewers which have spread information over a multitude of platforms that challenge historical ideas of ASD. Autistic creators representations are authentic and informative, a vast contrast to traditional media. Within online communities, autists can comfortably share experiences and advice, find likeminded people and receive social support. Social media, despite its challenges, has fostered communities that benefited people with ASD.
References
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