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1 with Permission to Put It Online Till It Goes Onto 1 With permission to put it online till it goes onto their webpage Preprint: To appear online (in different formatting of the table) in Disability Studies Quarterly, January 2014 Vol 34(1) Analyzing the discourse surrounding Autism in the New York Times using an ableism lens Alshaba Billawala Bachelor and Gregor Wolbring2* 1 BHSc student, University of Calgary; E-Mail: [email protected] 2Faculty of Medicine, Dept. Community Health Sciences, stream of Community Rehabilitation and Disability Studies, University of Calgary, 3330 Hospital Drive NW, Calgary, Alberta, Canada T2N 4N1; E-Mail: [email protected] * Author to whom correspondence should be addressed; [email protected]; Abstract: The topic of Autism is highly visible within academic literature (over 20000 articles in the database PubMed of US National Library of Medicine, National Institutes of Health and the public domain (79 Million hits in Google). Newspapers also show a great interest in autism. However despite the prevalence of autism coverage very little media analysis has been performed. We present here an analysis of the coverage of autism in the New York Times from the time the term autism first appeared (1973) to 2012. Ability expectations 2 and preferences are one dynamic through which members of a group judge others, themselves and their lives. Ability preferences and judgments are at the root of many rules of behaviours and customs. Ableism was one lens through which we analyzed the discourse surrounding autism in the NYT. We found that readers that rely on the NYT as a primary source of information get very limited information about what autism is and what factors are associated with autism and they are heavily exposed to a medical narrative. We suggest that the negative, medical narrative adds to the problems people with autism face. Keywords: autism; perception; media; New York Times; language; ableism Introduction: Swiss psychiatrist Eugen Bleuler introduced the term autism in 1911(Bleuler, 1950) as a basic disturbance in schizophrenia, in short, an extreme withdrawal of oneself from the fabric of social life, but not involving total exclusion of oneself. The term autism was redefined by Leo Kanner in 1943 (Kanner, 1943). In 1980 Autism was added to the DSMIII (Diagnostic and Statistical Manual of Mental Disorders) although the term autistic showed 3 up in DSM 1 section 000-x28 Schizophrenic reaction, childhood type (1952) and DSM 2 section 295.8 Schizophrenia, childhood type (1968). Autism is a highly visible topic within academic literature (over 20000 articles just in PubMed) and the public domain (79 Million hits in Google). Over 2000 articles in PubMed cover the epidemiology of autism (two examples (Fombonne, 1999; Duchan & Patel, 2012)) and over 400 articles in PubMed alone cover the MMR vaccine controversy around autism. Many other aspects of autism are investigated such as difference of perception between parents and people with autism (Johnson, Filliter, & Murphy, 2009), various aspects of parenting children with autism (Johnson, Frenn, Feetham, & Simpson, 2011; Hurlbutt, 2011; Bowker, D'Angelo, Hicks, & Wells, 2011; Neely-Barnes, Hall, Roberts, & Graff, 2011), perception of siblings and their relationship with their siblings with autism (Sage & Jegatheesan, 2010), indigenous (Kapp, 2011) and cultural views on autism (Solomon, 2008; Tincani, Travers, & Boutot, 2009). Various articles cover the debate around the traditional medical view of autism and the view which perceives autism as a form of neurodiversity (Bayliss, 2004; Trivedi, 2005; Baker, 2006; Fenton & Krahn, 2007; Broderick & Ne'eman, 2008b; Bumiller, 2008; Robertson & Ne'eman, 2008; Ortega, 2009; Baker, 2009; Seeman, 2010; Solomon, 2010; Yergeau, 2010; Pellicano & Stears, 2011; Langan, 2011; Jaarsma & Welin, 2012; Mackenzie, Watts, & Howe, 2012). 4 Newspapers also show a great interest in autism which is not surprising given that diffusion of knowledge through printed media is seen as an essential fabric of society (Nord, 1988; Weiner, 2009; Weinstock Netanel, 1996; Burns, 2007; Learned, 1924; New York Times, 1895; Nord, 1988; New York Times Magazine, 1790). The Canadian Newsstand, a database of 300 Canadian newspapers covering articles from 1980 onwards has over 3825 articles with autism in the title. The Times (UK) had its first article with autism in the title in 1969. The first article that has autism in the title in the New York Times (NYT) is from 1973. However despite the prevalence of autism coverage very little media analysis has been performed. There was the analysis of Australian newspapers (Jones & Harwood, 2009), British newspapers (Huws & Jones, 2011), and popular images (Sarrett, 2011a). We chose to perform a thematic analysis of the autism coverage in the NYT which is a particularly influential newspaper in the United States (Winter & Eyal, 1981). Ability expectations and preferences are one dynamic through which members of a group judge others, themselves and their lives. Ability preferences and judgments are at the root of many rules of behaviours and customs (Wolbring, 2012). Ability expectations (the want stage) often morph into a form of ableism where a given ability is seen as essential (the need stage). We use ableism as one analytical framework to analyze the discourse 5 surrounding autism in the NYT. The term ableism evolved from the disabled people rights movements in the United States and Britain during the 1960s and 1970s (Various, 2006). The term ableism was coined to be similar to sexism and racism, where a group could question certain negative behaviours towards themselves. Ableism allows for highlighting the disablement and disablism (Miller, Parker, & Gillinson, 2004) people experience whose abilities do not fit the cultural preference for species-typical normative ability functioning and who therefore are labelled as ‘impaired’, as not able enough, as not able in the right way. One could say that the medical and neurodiversity view of autism are based on different ability expectations. By using an ability expectation and ableism lens, we can identify what abilities are seen as essential over other abilities and what effect the favoring of certain abilities over others has in society, specifically for individuals with autism. Overall, the analysis of the discourse surrounding autism in the NYT adds one piece to the puzzle of the public face of autism; what individuals who read the NYT are exposed to and what implications this may have. It allows for inferences to be made about how the coverage surrounding autism can influence public perceptions and attitudes towards autism and what consequences this may have for individuals affected by autism. Looking at these articles through an ableism lens, we can analyse which abilities are seen as essential and which abilities and lack of abilities are labeled as impairments and/or disregarded as being 6 unimportant. It allows us to develop an understanding of what consequences can result from favoring certain abilities over others for autistic individuals. Methods The historical NYT database spanning the years 1851-2006 and NYT late edition (east coast) database spanning the years of 2007-2011 (both ProQuest databases accessed through the University) were used to obtain articles that discussed autism. A preliminary search of the historical NYT database using ‘autism’ as a keyword generated 2487 hits. This hit count was judged as too big to analyse. Therefore we limited our results to the articles that had autism in the title. This led to 205 hits with the first article appearing in 1973 all of which were collected. The articles downloaded as PDFs from the New York Times were images and therefore had to undergo optical character recognition (ocr) in order to be code-able. We used Adobe Acrobat 9 Pro software to gather all of the articles into one portfolio for ease of access and sharing and coding was performed in the same software (mark ups, highlighting, sticky notes used as memos to list the codes and themes). Any articles which were duplicates or did not directly discuss autism, despite having autism in the title were eliminated, and a total of 198 articles were used for the analysis. A mixed 7 methods approach was employed and both frequency, content and thematic analyses were performed. Firstly, in order to get a sense of what codes may be expected from the data, a review of the first 10 articles was performed by 2 individual coders. While these first 10 articles were reviewed, relevant codes were created and added to a codebook. Some examples of the preliminary codes included lack of ability, personal, statistics, and so on. By having 2 separate coders, for the first ten articles, we wanted to ensure that inter-coder reliability was being maintained and that both coders were making the same decisions about the codes that were interpreted as emerging from the data. In the end all articles were read and coded by both coders only that the second coder read the articles with the exception of the first 10 articles with the codes already added by the first coder and only suggested new codes or questioned certain codes. Disagreements were solved through discussion between the two coders. A summative content and thematic analysis of all of the articles was then performed in several steps. After the first 10 articles were reviewed, all of the articles were read in depth to obtain a comprehensive understanding of what was being discussed. Relevant words/content of the articles were then highlighted and coded and any new codes that 8 emerged from the data were added to the codebook. Simultaneously, any keywords pertinent to the topic that were appearing frequently were also recorded. A total of 44 codes were generated which were then reviewed and grouped together into categories based on relatedness. For example, “medical discussion” was used as an underlying category under which several sub codes were grouped such as symptoms, treatment, etc. Based on the codes and categories that were found, a number of themes were identified to represent the textual data that was collected and coded.
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