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To create a sense of community and inclusivity, I interviewed a few people who live with ASD, and wanted to share some of their experiences and opinions on not only how they feel ASD is portrayed in the media, but also their outlooks on charities and how to move forward in a more positive direction for on screen representations of ASD. I also conducted a survey with 46 participants to gather wider understandings.
Interviewees Max and Michael both talked about the misconceptions about ASD, as well as feeling like they were sometimes belittled or stereotyped due to living with ASD. Max (She/They) opened about how she was only diagnosed with ASD when she was 23 and spoke about how overlooked women usually are when it comes to discussions about ASD and diagnoses. Max stated that “One thing I have learnt is that ASD is a spectrum and if you meet one person with autism, you have literally just met one person with autism.” The many stereotypes established, much like those I have previously discussed, are having real world implications for those with ASD as Max goes on to talk about how people attempt to question her diagnosis of ASD with things like “but you’re not weird like Sheldon,” which draws in media portrayals as an instigator for these negative interactions. Sheldon from the Big Bang Theory (2007) is attributed to both the Savant stereotype and anti-social stereotype; and with such a large following, this misunderstanding of ASD has become paramount to the negative experiences had by those with ASD.
Max told the story of when she was diagnosed with ASD through a doctor's appointment, and her original thoughts when she first heard this were “I’m not like Sheldon from big bang theory, I can socialise better than that. I’m not as smart as the doctor from a good doctor either, So how could I be this?” As a woman diagnosed with ASD, Max felt as though there was a problem with the diagnosis since she didn’t fit the stereotypes that had been established in the media, showing the implications of these representations that we see daily in film and TV.
Michael (He/They) talked about an incredibly intriguing relationship on screen between portrayals of ASD and asexuality. ‘Perhaps one of the Biggest issues with the portrayal of ASD and ASD coding in [the] media [is] how we are commonly portrayed as Sexless.’ He goes on to talk about how those in film and TV who are coded, either directly or indirectly to have ASD, seem to have no agency for sex or intimacy. He continues, ‘Rarely are ASD individuals depicted in the same sexual situations as their Neurotypical counterpart’ and even makes mention to examples in film and TV such as JJ from Skins (2007) and Reid from Criminal Minds (2005). This avenue of representation is not something that I had taken a look at before, since my focus was on broader representations of ASD, but after speaking to Michael about this, it has become a future avenue of research as parts of the community believe that this coding is having negative effects on the understandings and relationships that those with ASD are able to establish.
Continuing to talk about the link between charities and understanding of ASD, something that I had noticed during my research for the report section was resounded by Max, Michael and other interviewees as a deep-seated dislike of many charities’ selfish disregard for those living with ASD. Autism Speaks, which was the charity I found most problematic and covered in the report in order to demonstrate how their practices while on the surface are expressions of community and wanting to help those with ASD, was met with the most combatant opinions by both Max and Michael as a charity that seeks to ‘cure’ ASD despite the fact that this is completely against what they and the wider community would want out of charity support. Even though a lot of the ASD community dislike the practices and opinions of Autism Speaks, they are still one of the biggest ASD related charities out there, which holds itself to their media marketing and background support. When talking about Autism Speaks and wider charities, Michael said ‘While I believe that the Organisation and its members do not wish to harm people with ASD and do wish to help, they do not engage enough with us as individuals who have our own views on ASD.’
Individualism in the ASD community is held in high regard, and the idea cast by film and TV of stereotypes and one size fits all is very much disliked by those in the community. Another interviewee who was contacted through the internet platform Reddit, said:
‘‘Obviously, representation shouldn’t just be about the good or the bad, but it’s extremely hard to watch something when the entire time, the person you’re projecting your sense of self onto is being made fun of or spoken for. They (the audience) don’t learn that it’s not okay to treat people like this. And it would be nice to show how these negative interactions really affected the person [with ASD] rather than just showing the negative interaction because otherwise it just portrays that it’s okay to make fun of us and to tell us that the person we are is wrong because it’s funny. Autistic people also have diverse types of struggles than just social problems though.’’
Moving forward into a more open space and showing realistic, honest representations is slowly happening, but there remains a lot of conflict over not just how ASD is represented in the media, but how it affects those with ASD in real life. Another interviewee said that “I would love to see some actual average autistic people in the media. Not a genius who can do 6-digit division in their head to 20 decimal places.” Opening up this conversation seems to be a difficult maneuver for individuals in the community as it is often larger charities like Autism Speaks that attempt to advocate for them, but do not actually advocate the things that those with ASD are troubled with. Max believes that ‘we are making steps’ towards more honest and open representations of ASD, but remarks that “Growing up we were shown that people with ASD either fail epically at being independent or they are super geniuses that work like robots and that really had some impact on me and how I saw ASD.” As someone who was diagnosed in her twenties, Max was able to see how the portrayals of the savant, the anti-social and other negative stereotypes really affected not only her own self-understanding and self-esteem, but also the pressure implicated to be one of those stereotypes that the media has cast upon them.
Michael ends his interview with a poignant mention to the realities of the portrayals of ASD in film and tv, saying that “the idea that ASD individuals are infantilised, [and] are often perceived as victims of our conditions, rather than as thinking, feeling individuals who are simply a little different. Despite what people may think we are not big children that need to be taken care of, we are perfectly capable of living independent, fulfilling, and productive lives.”
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