© 2015 Elena Konstantinovna SOKOLOVA
2015 – №2 (10)
Key words: autism, autism spectrum disorder (ASD), parents, mothers, charity, funds, Internet, Runet, web-site, social network, groups, communities, Facebook, VKontakte
Abstract: The work is devoted to the research of the informational presence of the issues of autism on the Internet, an overview of virtual platforms and communities. The goal of the text is to analyze the situation by collecting empirical data as a basis for further scientific discussion among specialists from various fields of science interested in the problems of autism.
The paper examines ASD digital resources including websites and online communities focusing on emerging social practices in the Runet. Studying problems of definition and statistics of ASD across the world, the author raises an issue of major discrepancies between Russia and international practices. Local ASD movement involving parent communities and charity funds emerged decades later comparing to the US and European countries, and now multiple attempts to introduce best practices locally can be observed at different levels. The paper reviews key stakeholders in this process and focuses on digital media tools, which help them to promote knowledge, raise funds, coordinate with each other. Based on empirical data collected online, the author makes a list of key resources, projects and events related to ASD in Runet.
The international perspective shows massive engagement of different social groups: autism not only about families but also about medical and social workers, state and public organizations, charitable foundations, researchers. Each group has its own interests, practical approaches, and views. Respectively, autism can be treated as a family or social problem; it can be a field of research or business.
Rights to conduct scientific debates on ASD matters still belong to mostly to professionals. However, there is a vast public response, which can be observed through media. The Guardian, Forbes and many others regularly write about autism. Themes like causes of emergence, diagnosis, correction and social adaptation are among the most popular issues, as well as media speculations around autism growth projections, which increasingly called the “epidemic” (Arkowitz, and Lilienfeld 2007, Roithmayr 2012; Sims 2015; Seidman 2015, etc.) The digital space becomes an important extension of media channel, but, importantly, it gives a possibility of peer-to-peer communication for billions of people.
In Runet this information clutter related to ASD quickly replaces information vacuum. It is possible now to get lots of information, find different online and offline groups, cases, and practices related to autism. On the other hand, sometimes it seems too much information and its quality can be questionable. Obviously, for people who are new to this subject, it can be an issue, as they need to know how to navigate and which path to choose to ensure safety and quality. English language skills can definitely help to partially remove quality issue providing access to international well-organized public resources – but in reality, not many Russians can do it.
Social networks facilitate informational exchange, especially among non-specialists, and this exchange is different from professional debates: millions of individual voices translate private views and experiences, and many of them are far scientific ones. Digital media allow anyone to speak out publicly. However, not every single voice is equal in promotional power. It is important to put the question: who can exactly be seen as “talking” on the topic of autism on the Internet.
Based on recent online observations, it is not the state or official medicine speaks about autism in the contemporary digital world. For example, taking web-search results, those resources are less visible compared to public ones, while in social networks they are not visible at all. In Russia this situation is even worse: rare and contradictory information from medical and social officials seeps to the Internet through traditional off-line channels such as conferences, interviews, and it is up to third parties to publish it.
The informational landscape for autism-related matters is formed mainly by funds and parental communities. This creates a specific culture, which reflects a certain point of view, knowledge, and objectives of these stakeholders. There also business and public services, which are deeply engaged in autism networks. In some countries, active social movement took place more than 50 years fighting for rights and budgets, and as a result, now these countries have massive programs for medical and social support of ASD patients and their families. Russia seems to follow the same path but decades later.
The Internet provides an opportunity not only for searching for the “truth” about autism; most importantly, it gives a new opportunity to jointly create it. It was said during one of ASD conferences in Moscow, the truth is that “truth” of the medical officials and the “truth” of parents in Europe both were changed significantly over the decades.
Parents and public organizations often were the key drivers of these changes; they work to make these changes happen. This is to quote the head of one of leading ASD funds in Russia: “So, we engaged in social design. […] We are working with the government of the Voronezh region because the great and beautiful governor Alexei Gordeyev became interested in this program and said let’s get to us. We have some kind of cooperation, I will say this with cautious optimism, with the Department of Education of Moscow. But it still burns everywhere, the attic is burning, the cellar is flooded, there is nothing in the country, and still we rush about, we are torn. For your understanding, the managing board of the fund are three persons, staff is four persons. That is, we are seven women, in fact”(Smirnova 2015).
Russian ASD activists perform an important role of information and coordination hub, which is essential: there is a need for a public domain, for an interface that makes possible cross-communication among all stakeholders: doctors to parents, parents to other parents, etc. (Autism 2015).
The Internet removes the limitations of distance and other communication barriers for anyone. It also becomes a resourceful field of research for social scientists providing relevant data and insights for better understanding burning social issues such as ASD. Proving empirical data related to autism and social engagement in Runet, this paper suggests further interdisciplinary dialog about this topic.
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