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Fernanda Valle, Gustavo Saldanha, Autism Disorder in KO: Classification, Representation and Social Impact in:

International Society for Knowledge Organziation (ISKO), Marianne Lykke, Tanja Svarre, Mette Skov, Daniel Martínez-Ávila (Ed.)

Knowledge Organization at the Interface, page 572 - 574

Proceedings of the Sixteenth International ISKO Conference, 2020 Aalborg, Denmark

1. Edition 2020, ISBN print: 978-3-95650-775-5, ISBN online: 978-3-95650-776-2, https://doi.org/10.5771/9783956507762-572

Series: Advances in Knowledge Organization, vol. 17

Bibliographic information
Fernanda Valle – PPGCI IBICT UFRJ, Brazil Gustavo Saldanha – IBICT - UNIRIO, Brazil Autism Disorder in KO Classification, Representation and Social Impact Abstract: In the health domain, the limitations and uses of language for the knowledge representation reveal a few dilemmas that extrapolate the linguistic structure: building different epistemological and ontological approaches materialized in knowledge organization systems. From the philosophy of language, this work analyzes the classifying condition of Autism Spectrum Disorder between the health domain and information retrieval, discussing the intersubjective dimension that crosses the meta-representation of knowledgeorganization instruments. The complexity associated with this domain, which is present in the medical debate about the concept definition, refers to the spectrum of the possibilities to recognize the autistic individual. This spectrum guides us to the pragmatic dimension in the epistemological construction of the knowledge organization. It also finds its roots in the semiotic studies domain of the limits of the Theory of the Concept. Even though the Portuguese version for the Diagnostic and Statistical Manual of Mental Disorders does not use the terms "severe" or "mild" to classify the degrees of autism, there is evidence of them being recurrent on digital content found on the web. From an empirical perspective, this research aims to verify if and how the languages used on the web, specifically the use of mild and severe dichotomy, affect the construction of official discourses about the degrees of autism and their forms of representation. It is a quantitative and qualitative analysis segmented in three steps: analysis of the DSM e International Classification of Diseases (ICD), analysis of the scientific production about autism indexed in the Web of Science, Scopus, LILACS and Medline databases in the last five years ( we will only consider documents indicating the use of the term mild as a degree of severity of autism) and evaluation the unscientific production published on Twitter from October to December 2019. The results aim to highlight the gaps in the representation of autism and identify promising theories of knowledge organization for understanding these dilemmas. 1.0 Introdution The manifestation of oneself depends on a combination of physical and symbolic language. In a Cratylus dialogue, Plato debates the nature and arbitrariness of names and the possibility of language encompassing the exact representation of the object itself, that is, whether it would reflect the object itself. This doubt is intrinsic to the knowledge organization (KO). Its theoretical and epistemological demarcations are based on recorded information, which is already materialized into words and symbols. If what determines the subject is what he thinks and how he expresses himself, how is it possible to name and classify individuals who may not express or interpret codes (such as the native language, for example) in the same way as their peers? This is the reality faced by Autism Spectrum Disorder (ASD), which impacts on several fields of knowledge. Without unique genetic markers, it has different effects, sometimes contradictory, depending on the individual. Based on the understanding that the human being is not constituted ontologically only by a biochemical combination, with contributions from the KO, anthropology, philosophy of language, and semiotics, the work investigates this question: is the classification "mild autism" possible? Specifically, this work explores the use of the word "mild," which affects the construction of official discourses on the degrees of autism and their forms of representation. 573 2.0 Methodological approaches Hjørland (2008) explains that the KO is about not only documents, but also concepts and mediation of these concepts. This research sought to identify the political and social power of mediation through concepts in the context of autism. The Diagnostic and Statistical Manual of Mental Disorders (DSM) outlines three levels of severity: "demanding support," "demanding substantial support," and "very substantial support" from two broad categories of analysis: social communication and restricted and repetitive behaviors. Stepping from DSM and International Classification of Diseases (ICD), quantitative and qualitative analysis segmented in the other two stages were performed at the practical level. The analysis of scientific production on autism indexed in the Web of Science, Scopus, LILACS, and Medline databases using the descriptors "mild autism" or "mildly autistic" in Portuguese and English totaling 764 documents. It was possible to observe an increase in scientific production with the use of terms from 2014. Thus, the choice was to reject the last five years (2015 to 2019). From the new total of 255, we selected those who debate degrees of severity and use the term mild autism, resulting in 31 documents. Excluding duplicate items, the final total was 25 items. Despite the DSM and the ICD not providing for the classification of mild autism, in the scientific literature, researchers use this term, showing an increase in publishing in the last five years - which is interesting, given that the DSM-5 is from 2013. Therefore, its update does not seem to justify such popularization. The basis for the collection of terms published on Twitter, from October to December 2019, follows these search descriptors: (Asperger, 50, 199 items), ("autismo leve" OR "autista", 706 items), ("mild autism" OR "mildly autistic", 1,199 items), ("autismo severo" OR "autista severo", 910 items), ("severe autism" OR "severe autistic", 519 items), ("aspie" AND "autism mild", no results), ("aspie" and "mild autism", no results), ("Asperger" and "autismo leve", 44 items), ("Asperger" and "mild autism", 03 items), totaling 53,580 tweets. Since the goal was to verify how the use of certain terms can influence speeches, from a qualitative point of view, we decided to list the ten tweets of each descriptor with the highest number amount of shares and the 10 with the highest number of indication as favorites, totaling 123 tweets. Excluding the duplicates posts, it came to a total of 80 publications for conducting a content analysis. Of the 80 items, we identified 20 subjects, such as symptoms, prejudice, activism, request for help, and medicalization. For this work, the focus will be on two categories: against the use of the term mild autism (8 items) and use of the term mild autism (27 items). After analyzing the publications, we observed that of the 27 internet users who are in favor of "mild autism," 9 associate this degree with Asperger's Syndrome. It is interesting to note that, despite not having this information explicit in reference documents, such as the ICD and the DSM, the public tends to associate Asperger's syndrome as synonymous with a mild degree of autistic disorder. 3.0 Final considerations The difficulties of classification in health multiply, therefore, within the limits of classification in the territory of the KO. The theoretical impact is in the difficulty that a classic conceptual approach contains in its formulation. A non-conceptual approach to the mediation between health classifications in the autism domain and KO 574 classifications for the same domain seems much closer to the tenuous political reality of autistic subjects. All information production implies a recovery action for its sharing or elimination. In the social field, the KOS can define how people will live and which kind of medical services and public policies will be installed. In the beginning, we questioned if mild autism is a possible classification. When constructing the diagnostic categories, which questions are most relevant, which behaviors will be listed, which will be excluded, what weight will one behavior have to the other, which emotion will be seen as deviant, which will be the standard? The empirical research has shown that, gradually, the idea of mild autism is growing and building discourses on these individuals. This finding indicates the need for a more profound unfolding about the sources and user studies. The theories, methods, and instruments of KO should permanently dialogue and rethink their practices in the face of the autism domain and its challenges. Acknowledgment This study was funded by CNPq-Brazil. Thanks to Josir Gomes (PPGCI IBICT UFRJ – Brazil) for helping us with the Twitter monitoring plataform. References Hjørland, Birger. 2008. “What is Knowledge Organization (KO)?” Knowledge Organization 35: 86-101. Plato. 1963. Crátilo: Diálogo Sobre a Justiça dos Nomes. Lisboa: Sá da Costa.

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Abstract

The proceedings explore knowledge organization systems and their role in knowledge organization, knowledge sharing, and information searching.

The papers cover a wide range of topics related to knowledge transfer, representation, concepts and conceptualization, social tagging, domain analysis, music classification, fiction genres, museum organization. The papers discuss theoretical issues related to knowledge organization and the design, development and implementation of knowledge organizing systems as well as practical considerations and solutions in the application of knowledge organization theory. Covered is a range of knowledge organization systems from classification systems, thesauri, metadata schemas to ontologies and taxonomies.

Zusammenfassung

Der Tagungsband untersucht Wissensorganisationssysteme und ihre Rolle bei der Wissensorganisation, dem Wissensaustausch und der Informationssuche. Die Beiträge decken ein breites Spektrum von Themen ab, die mit Wissenstransfer, Repräsentation, Konzeptualisierung, Social Tagging, Domänenanalyse, Musikklassifizierung, Fiktionsgenres und Museumsorganisation zu tun haben. In den Beiträgen werden theoretische Fragen der Wissensorganisation und des Designs, der Entwicklung und Implementierung von Systemen zur Wissensorganisation sowie praktische Überlegungen und Lösungen bei der Anwendung der Theorie der Wissensorganisation diskutiert. Es wird eine Reihe von Wissensorganisationssystemen behandelt, von Klassifikationssystemen, Thesauri, Metadatenschemata bis hin zu Ontologien und Taxonomien.