Introduction
My dissertation undertook an investigation into how culture might affect understandings of representations of Autism Spectrum Disorder (ASD) in media, through a case study of a Korean drama It’s Okay to Not be Okay (2020). By using both a textual analysis and a reception analysis, I was able to uncover that culture differences between South Korea and the western world affect not only understandings of ASD, but also the symptomatic expression of ASD and openness to discussing it. This is important as it reflects cultural barriers to communicating conditions like ASD, as well as uncovering how culture can affect ASD. This report will outline how the charity sector could seek to benefit from research of this type, since advocating awareness and education for ASD is vitally important to ASD orientated charities.
Industry
The charity sector has prevailed throughout industry fluctuations especially during a time of uncertainty with the COVID pandemic. With a focus on understanding and raising awareness, a lot of charities can boast agility as they shift between different resources and awareness campaigns (Hyndman, 2017). Since they are donor-centric, they are positioned to continually evolve and angle themselves to suit their audience. Though unfortunately, a number of in person events that drive the industry, such as charity runs, marathons, charity balls and other in person fundraising events were not able to go ahead until recently. More research-oriented charities have been struggling due to less funds because of this; and so, a new dynamic had to be approached (Alam, Rampes, Ma, 2021). There has been a large creative shift in the non-profit and charity sector and successful companies have been able to adjust to this environment by using social media and online resources like digital conferences and informational videos (Hyndman, 2020). Thanks to the flexibility of charities, a lot of them were able to replace these with events that people could do themselves, like recording a step count in place of a marathon, or having a formal party through zoom etc.
With the internet and social media, there has been a large shift in the way we express and understand each other; but this can come at the cost of personability (Marwick, 2013). This can create a sense of uncertainty as brands struggle to understand their audience, but audiences can also struggle to understand and trust brands because of this lack of personability (Durante, 2011). Integrating this with a diversifying workforce, charities have been able to create a personal brand as they utilise the voice of their audience, such as having interviews and spotlights with their workers/volunteers but also those that interact with the charity. Such as, Cancer Research UK interviewing or spotlighting those that the charity has helped through their fundraising. By creating this environment where the individual is spotlighted invites audiences to find relatability and understanding in the brand established, as well as the storytelling formed through these interactions make audiences more likely to invest/donate to the charity or assist in fundraising (Kemp, et al., 2021). Through this use of storytelling, although based in reality, charities can establish their personability and it has been shown through research that this increases engagement in businesses and contributes positively (Kemp, et al., 2021).
Organisation
Autism Speaks is a USA charity concerned with attempting to create more of an understanding and acceptance of those with ASD. Although it is based in the USA, it has worldwide reach, and as the wider Western world including the USA is discussed in my dissertation it is relevant geographically. The charity works through education, advocacy and support of those with ASD and their family, caregivers etc. as well as funding research into ASD for better understanding and interventions. Autism Speaks primarily raises awareness through information listed on their website, supporting scientific research into ASD, fundraisers like walking, utilising social media spaces to raise awareness, and sharing personal stories of those with ASD. Although Autism Speaks has been criticised for insensitivity of their usage of words and phrases, as well as previous controversies connected to some of their leaders, it still has a key role in raising awareness and advocacy of ASD; and has been moving in a purposeful direction to right past wrongs. By acknowledging this, understandings about how not to inform and educate about ASD can be reflected upon, a lesson learned though continued communication between Autism Speaks and its community.
Autism Speaks is attempting to expand their audience so that society can understand and assist those with ASD. This is important, as it links in with my dissertation which discusses the cultural links and barriers to understandings of ASD, which can be seen in everyday life. Autism Speaks utilises multiple platforms and discussions to draw in these different audiences, from scientific articles to short social media posts, their reach is expanded by this broad outlay which allows audiences of all interest to interact with Autism Speaks as a charity but also their mission, which is to open understanding and dialogue about ASD.
Literature Review
Although discussion on ASD in the context of media representations is not inherently questioned by Autism Speaks and their mission, it can be said that reflections made about the problems with ASD representation in media are addressed through their advocacy of accurate and understanding representations of those with ASD. Understandings of ASD are often influenced by how ASD is portrayed in the media, and Autism Speaks works towards providing these more truthful and honest representations, while having to fight the prejudiced opinions that currently exist about ASD, such as the influences of savant syndrome and anti-social behaviour in film and TV (Dean, Nordahl-Hansen, 2021, Draaisma, 2009, Poe and Moseley, 2016).
The topics in my dissertation pertaining to family values meld well with Autism Speaks as it plays a significant role of raising awareness and education for ASD, but also the people around them as well, including family. In this case, there is overlap as Autism Speaks places importance on relationships between the community, as well as informing those relationships with scientific research and perspectives of those embedded within the community such as those with stories of their journey with ASD. On their homepage, links for parents, educators and professionals are given so that anyone can learn more about ASD from these different perspectives, being an inclusive organisation that does not just focus on the individual but on the community or ‘family’ as a whole, creating a sense of family values that we can all learn from each other.
While my dissertation does not expressly introduce concepts behind culture and immigration, as the world becomes more united, travel and immigration follow. In 2019, the Korean Ministry of Foreign Affairs stated that approximately 40,000 South Koreans resided in the UK, and there are more South Korean students deciding to study abroad in the UK as easier access is granted (MOFA, 2022, Nott, 2022). This introduces a prospect of cross-culturalism, as not only more South Koreans are deciding to move or study in the UK, but it can be said about the wider East West cultural gap. In this context, Autism Speaks as a worldwide operating charity does not just reach British and Western populations. With the unity expressed through immigration and travel a wider cultural audience can be approached by picking up these theories, about how culture can dictate understandings of ASD, as well as symptomatic expression, resulting in different perspectives of ASD (Mandall and Novak, 2005). As symptomatic expression is different across cultures, such as those with ASD in the US and UK expressed more aggressive behaviours, South Koreans could produce more repetitive behaviours, as well as a greater understanding of social skills (Matson et al., 2011Chung et al, 2012, Scarborough and Poon, 2004). A key factor in this, as discussed by Kim et al., (2011) is parents’ education, which affects relationships and understandings of ASD, as well as its treatment (Kim et al., 2011). Linking this to Autism Speaks, their research has recently begun to undertake a similar angle, introducing debates of race and culture into their research, and through this, they can create a cross-cultural approach to advocacy.
In fact, Autism Speaks has published a research article on culturally influenced perspectives of the stigma of Autism, focusing on South Korea. This article coincides with the cultural concepts discussed in my dissertation, although it is not remarked as a ‘stigma,’ just differences of understanding. As Autism Speaks is opening this pathway of communication about culture, the research discussed in my dissertation overlaps with their more research led field. While there is not a lot of discussion about how this reflects in the media space, it creates a strong basis for real world implications of media influence, and actively seeks to break down the barriers and stereotypes established by media, such as the savant and anti-social stereotypes, as well as that of the ‘big bad monster’ of the family (Draasima, 2009, Allen, 2017, Kittay, 2001, Nordahl-Hansen, Tøndevold, and Fletcher-Watson, 2018).
Findings and Analysis
While the aspect of my dissertation analysis focusing on the case study under a textual analysis may not directly associate with either Autism Speaks or the wider charity focused industry, there is something to be said about how the textual analysis uncovered It’s okay to not be okay (2020) as an accurate representation of ASD, as well as the family community around it. This holds as proof that the media can in fact put strength into the narrative of realistic portrayals of ASD and the family values surrounding it, much like how Autism Speaks is attempting to do through their work. While Autism Speaks, or other charity focus is not on the fictional media space, it demonstrates the capabilities of expressing the mission statement outlined by Autism Speaks, in a way to educate and understand ASD suitable for more diverse audiences that they may not have considered. That is not to say that charities should invest their time into big budget TV productions, but rather that the sentiments they are trying to convey, raise awareness and advocate, exist more broadly than just the charity sector.
Formulated through an investigation of reviews of the case study, my dissertation found that culture affected how willing or open people were to talk about or acknowledge ASD, reflecting that South Koreans were less likely to open and talk about ASD than their international counterparts. While my dissertation discusses many reasons for it, it seems to stem from a thought that discussions on ASD and other conditions are better left unsaid, as well as correlating with a resistance to the understanding and diagnosis of ASD. As discussed in the literature review, this can be seen in South Korea through their focus on family culture and competitive nature as they are told to strive for perfection and any kind of condition like ASD is seen as making someone lesser. While this attitude is slowly changing in South Korea, with some of the South Korean reviews actively attempting to talk about ASD as a condition that affects people in diverse ways, perhaps a charity like Autism Speaks could shape a path in allowing a more open conversation about these types of conditions.
Drawing from an earlier discussion on the agility and uniqueness of the charity sector, it would make sense for the future of advocacy of ASD to root themselves in the charity sector since it is a sector that is run and funded by the public (Hyndman, 2017). Since charities have begun relying on personability as a method to attract new audiences and donators, it would be a good opportunity to notice these ideas of cross-culturalism and as discussed in my dissertation, allowing a flourishing South Korea to become more open and active in debates about ASD like their international counterparts (Marwick, 2013). Autism Speaks is also well positioned as a research charity to offer up realistic concepts and perspectives on ASD, as they draw not just from theoretical research but from individual stories, of those with ASD, as well as the family/community around them.
But, through researching the dissertation and analysing the findings, perhaps there is more to be learned about the links between culture and ASD. As discussed earlier, symptomatic expression can differ between cultures, so not only is there a difference in understandings of ASD, but there is also a difference in how it expresses itself within different cultures (Matson et al., 2011, Chung et al., 2012) This would indicate that internationally, there is more to be learned and understood about culture and ASD, so not only are there educational opportunities for South Korea, but also for the wider world as there are many cultures and communities that are intrinsically connected throughout the world. Autism Speaks has a reach wider than just the USA, and so it is positioned well to discuss these cultural situations of ASD in its symptomatic expression, as well as how it can be understood better within these distinct cultures.
Where next?
Merging these ideas together, I think an important step would be to focus on a more serious and factual awareness campaign, while introducing concepts of personability with diverse content and perhaps even taking in stories and accounts of those with ASD or the people around them.
In a similar direction to Autism Speaks, I believe short blogs or articles about understandings of ASD, and how it is culturally informed can be had. Through this, not only can I broaden my understanding of the literature in my dissertation, but also open it up to feedback from audiences about how it may affect their lives. As well as more of a personal approach formed through social media such as an Instagram account that will be utilised to create this in short form, still delivering informative content, but ‘bite-sized’ translations for those who may not have the time or interest in reading blog posts.
Also using a blog and Instagram as a platform, more informal conversations about entertainment media could be utilised, such as talking about portrayals of characters with ASD in film and TV, informed by the discussions and theory in my dissertation, to ascertain if they are realistic or not. This way, the audience would gather a better understanding of realistic portrayals of ASD as well as having a recommendation for something new to watch. As Instagram is a broadly visual platform, it melds well with entertainment discussions as images or videos can be used to express differences or similarities in expressions of ASD.
Interviews, either text based, or audio based would be beneficial as it creates that sense of personability discussed earlier, while it also gives opportunities to create a hub of perspectives about ASD, perhaps even culturally informed if I am able to open communication with some South Koreans who have ASD or are familiar with it. Should these interviews take place verbally, it could be useful to use a podcast format through the blog to allow listeners clear understandings of the discussion, but I am aware that not everyone who I interview will want to undertake a verbal interview. While I do expect to encounter some culturally oriented barriers, by utilising the research discussed in my dissertation about how and why these differences in understandings and appreciations of ASD occur, I can create an ethical space where culture is appreciated but should not be a barrier for discussions.
Words: 2556
Bibliography
Alam, A., Rampes, S., Ma, D. (2021) ‘The Impact of the COVID-19 Pandemic on Research’, Translational Perioperative and Pain Medicine, 8(1), pp. 312-314
Allen, H. (2017). Bad mothers and monstrous sons: Autistic adults, lifelong dependency, and sensationalized narratives of care. Journal of Medical Humanities, 38(1), pp.63–75.
Chung, K., Jung, W., Yang, J., Ben-Itzchak, E., Zachor, D. A., Furniss, F., Heyes, K., Matson, J. L., Kozlowski, A. M., Barker, A. A., (2012) ‘Cross cultural differences in challenging behaviours of children with autism spectrum disorders: An international examination between Israel, South Korea, the United Kingdom, and the United States of America’ Research in Autism Spectrum Disorder, 6(2), pp.881-889.
Dean, M., Nordahl-Hansen, A., (2021) ‘A Review of Research Studying Film and Television Representations of ASD’ Review Journal of Autism and Developmental Disorders, Published Online.
Draaisma, D. (2009) ‘Stereotypes of autism’, Philosophical transactions of the Royal Society Biological sciences, 364(1522), pp.1475–1480.
Durante, M., (2011). The online construction of personal identity through trust and privacy. Information, 2(4), pp.594-620.
Hyndman, N. (2017) ‘The charity sector— changing times, changing challenges’ Public Money & Management, 37(3), pp. 149-153
Hyndman, N. (2020) ‘UK Charities and the pandemic: navigating the perfect storm’ Journal of Accounting & Organisational Change, 16(4), pp. 587-592
Kemp, E., Porter III, M., Anaza, N.A. and Min, D.-J. (2021), "The impact of storytelling in creating firm and customer connections in online environments", Journal of Research in Interactive Marketing, 15(1), pp. 104-124
Kim, U. S., Leventhal, B. L., Koh, Y., Fombonne, E., Laska, E., Lim, E., Cheon K., Kim, S., Kim, Y., Lee, H., Song, D., Grinker, R. R., (2011) ‘Prevalence of Autism Spectrum Disorder in a Total Population Sample’ American Journal of Psychiatry, 169(9), pp.904-912.
Kittay, Eva Feder. (1999) Love's Labor: Essays on Women, Equality and Dependency. New York: Routledge.
Mandall, D., S., and Novak, M. (2005) ‘The role of culture in families’ treatment decisions for children with autism spectrum disorders’ Mental Retardation and Developmental Disabilities Research Reviews, 11(2), pp. 110-115.
Marwick, A. (2013). ‘Online Identity.’ In Hartley, J., Burgess, J. & Bruns, A. (eds),
Companion to New Media Dynamics. Malden, MA: Blackwell, pp. 355-364.
Matson, J. L., Worley, J. A., Fodstad, J. C., Chung, K. M., Suh, D., Jhin, H. K., Ben-Itzchak, E., Zahor, D. A., and Furniss, F., (2011) ‘A multinational study examining the cross-cultural differences in reported symptoms of autism spectrum disorders: Israel, South Korea, the United Kingdom, and the United States of America’ Research in Autism Spectrum Disorders, 5(4), pp. 1598-1604
MOFA (2022) Homepage. Available at: https://overseas.mofa.go.kr/gb-en/index.do(Accessed:17/03/2022). [Exact article was unavailable]
Nordahl-Hansen, A., Tøndevold, M., & Fletcher-Watson, S. (2018). ‘Mental health on screen: A DSM-5 dissection of portrayals of autism spectrum disorders in film and TV’. Psychiatry Research, 262, pp.351-353.
Nott (2022) South Korea: study abroad dips 41% in two years, Available at: https://thepienews.com/news/number-of-south-korean-students-abroad-drops-by-41/(Accessed: 17/03/2022).
Poe, P., Moseley, M. C., (2016) ‘"She’s a little different": Autism-Spectrum Disorders in Primetime TV Dramas.’ ETC: A Review of General Semantics. 73(4), pp.291-313.
Commentaires