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 excluding 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 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).

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 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 which 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 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 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 PDF's 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 thee 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 methods approach was employed and frequency, content and thematic analyses were performed.

First, 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, etc. 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 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. A frequency analysis was also performed to see how often certain themes emerged. Simultaneously, a number of ability expectations were identified which were also categorized as a recurring theme in the data. A timeline with these underlying themes was then created in 10 year increments to see when themes appeared and if there were any major differences among the themes that appeared between the different time periods. The timeline highlighted 4 different time periods: 1973-1983, 1984-1994, 1995-2005 and 2005-2011. Lastly, a frequency analysis was conducted in order to get a sense of how frequently certain themes appeared within a given time period.

Results

In total, 198 relevant articles were analyzed from the New York Times (Historical 1973-2006 and East Coast edition 2007-2011). Of all of the articles that were analyzed, 24% of articles discussed lack of abilities of autistic individuals while 19% discussed the positive abilities associated with autistic individuals (see Table 1 and 2). Further analysis of the data using an ableism lens, revealed several expected abilities which were not explicitly mentioned in a sense that they used the term ability (see Table 3). A total of 130/198, or 66% of articles reflected some ability expectation of autistic individuals. For example, 14 articles in the last time period (2005-2011) mentioned an ability expectation of autistic individuals to be social (see Table 3) whereby some terms such as 'withdrawn', 'totally isolated from outside world', 'difficulty socially interacting' we interpreted as the expectation to be social (see Table 3). Overall, there is a great focus on expected but lacking abilities of autistic individuals in the data in comparison to the positive abilities that are seen to be possessed by autistic individuals.

The thematic analysis of the data revealed several common themes that emerged from the data (see Table 4). 49% of all articles analyzed discussed the symptoms and behaviors associated with autism, 43% discussed statistics of autism, 37% focused on providing descriptions of autism, 29% were personal stories told by autistic individuals or about specific autistic individuals, 24% focused on describing treatments (medications, therapy other) while 23% focused on describing the results of these treatments (positive, negative). Other emerging themes were vastly underrepresented in the NYT. Only 15% of the articles discussed the effect that autism has on others, 13% on the environmental causes linked to autism, 12% sentiment fitting with a neurodiversity perspective (although the term neurodiversity only showed up twice (Harmon, 2010; Harmon, 2011a), 12% on the lack of any known cure, 8% on the brain activity of autistic individuals, 7% discussing the costs associated with autism, 6% on discrimination against autistic individuals and lastly, only 2% on rights of autistic individuals.

We identified some emerging thematic trends over the years that are important to highlight (see Table 4 and timeline). We observed an increase in the number of articles covering autism that could be seen to fit with some aspects of the neurodiversity angle of autism, however the number of articles discussing this perspective were still fairly low (12%). We saw a consistently high coverage of statistics of autism prevalence throughout all four time increments (43%). We detected the emergence of articles discussing the controversy surrounding vaccines and autism between 1995-2011 and the percentage of articles discussing the controversy remained fairly constant (~31%). Of the themes identified the two themes to be least discussed included discrimination against autistic individuals (6%) and rights of autistic individuals (2%).

Table 5 highlights the findings of the content analysis. It highlights the important keywords identified in the autism discourse in the NYT from 1973-2011 and how frequently certain keywords appeared.

Discussion

The NYT (Nord, 1988; New York Times Magazine, 1790), is important in informing the 'average' person about significant social issues. Autism is an important topic which is covered substantially in the NYT. However the information one receives as a reader of the NYT in regards to autism is uneven and biased. As a reader, one would be mostly exposed to a medical narrative as to the description of the person as well as the 'condition' and the problems and solutions related to autism and the carrier. The most common themes under the overall medical perspective theme included: lack of known cure, lack of known cause, biological and environmental causes, brain activity in autistic brains, treatments associated with autism, results of these treatments and lastly, symptoms and behaviors associated with autism.

However there is an alternative narrative in regards to autism; since the 1990's (Jaarsma & Welin, 2012), the cultural concept of neurodiversity has been discussed, which questions the medical deficiency discourse that people with certain labels such as autism, Asperger's syndrome, attention deficit-hyperactivity disorder, bipolar disorder, developmental dyspraxia, dyslexia, epilepsy, and Tourette's syndrome are exposed to (Aspies for Freedom, 2012; Boundy, 2008; Broderick & Ne'eman, 2008a; Ortega, 2008; Sarrett, 2011b). The term neurodiversity however showed up only twice (Harmon, 2010; Harmon, 2011a) in the NYT. One article covered Ari Ne'eman (someone who is labeled as having Autism) who was appointed to the National Council on Disability by President Obama and who came under fire because of his support for Neurodiversity and the idea that society ought to concentrate on accepting autistic people, not curing them (Harmon, 2010). Another article stated:

Some advocates of "Neurodiversity" call this the next civil rights frontier: society, they say, stand to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talent, advocates say, while decreasing costs to families and taxpayers for daytime aides and healthcare and housing subsidies estimated at more than $1 million over an adult lifetime (Harmon, 2011a).

Some statements can be seen to be sync with the neurodiversity agenda even though the term neurodiversity is not mentioned:

"But it would really be great if my son were truly accepted as a full member of his community" (Letter to the Editor by McCarty, 2007) "Until those answers are found, we must help adults with autism like Justin Canha, 22, featured in your article, become valued members of our community. People with autism are no different from anyone else — they want jobs, a home and friends" (Letter to the editor by Wright Suzanne and Wright Bob of Autism Speaks, 2011)

"Let's embrace a diverse work force and capitalize on the great gifts and talents people of all types provide" (Letter to the editor by Kenig Melissa, 2011)

"Jack and Kirsten considered autism a part of who they are, and fundamental to what drew them to each other." (Harmon, 2011b)

"As the mother of a young autistic adult, I thank you for acknowledging the pro-autistic point of view. Understanding and acceptance of our kids is a long way down the road, but I look forward to the day they will be welcome to live in the world as autistic people," (Letter to the editor Anne Bevington, 2004)

"My son is not a plague or a tragedy;…" and "What really needs to be fixed is how the world looks at autism" (Letter to the editor Jeanne Kelly, 2004)

However, overall the neurodiversity angle was considerably underrepresented. By mainly focusing on and representing the medical view of autism, the NYT is providing its readers with a skewed image of how autistic individuals ought to be thought about and how autism people think about their 'condition' and themselves. The nearly exclusive medical narrative is especially troublesome for the portion of the autistic population, who do not follow the medical narrative but who put forward a narrative that seeks acceptance from society for who they are. These individuals have no desire to be changed in any way; they think of autism as a part of their identity and who they are. We are influenced by others' perceptions of us and therefore, this skewed representation can have detrimental effects on the self-esteem of individuals with autism and their perception of who they are. As to the medical bias of the NYT, this bias has been found by others who investigated Australian newspapers (Jones & Harwood, 2009), British newspapers (Huws & Jones, 2011), and popular images (Sarrett, 2011a).

As biased as the general portrayal of autism in the NYT is the portrayal of the specific barriers experienced by those labeled as such and interventions suggested and performed as a result of such diagnoses. Many articles in the NYT talk about curing autism; however, little coverage is given to social determinants of health and their relationship to autism. Medical interventions and problems are only one aspect of health. There are also many interventions on the social level that are equally important levels of interventions. Some SDOH (social determinants of health) that are considered important in terms of contributing to our health include: income and income distribution, education, unemployment and job security, early childhood development, employment and working conditions, food insecurity, housing, social exclusion, social safety network, access to health services, gender, race and disability. These are all important concepts to explore. The NYT autism discourse barely discussed most of these social determinants. Even when they did, they were often covered from a medicalized angle, as in the following example:

… Department of Education, where concern had grown because of the increasing number of children with autism coming into public school systems. In addition, several hundred lawsuits by parents have demanded better services for their autistic children. Schools do not routinely offer diagnosis or treatment for autism until age 3 or later. (Hilts Philip J., 2001).

As to statistics, the NYT covers extensively the prevalence of autism, but there was no mention in the NYT of other statistics such as how many autistic individuals get a post-secondary education, or any sort of education at all. The few articles that do mention employment, mention autistic individuals' inability to get jobs, however no statistics are provided in the NYT although they exist (Autism now, 2012). There is no coverage on what we can do to improve their likelihood of obtaining jobs. The absence of statistics and coverage of non-medical social determinants of health undermines the importance of these issues in society and is another example of the biased autism coverage in the NYT that leads the reader toward a certain direction of perception of the topic of autism. Again this lack of coverage of human rights related issues is in sync with what was found for Australian (Jones & Harwood, 2009) and British newspapers (Huws & Jones, 2011) which have negative and positive stories but little concrete statistics such as how many people with autism are unemployed.

There is no coverage on what can be done to improve the social determinants of health situation and with that the quality of life of people labelled as having autism. Integration, equality, combating stereotyping and non-discrimination are considered to be very important in bringing together members of society. However, in the NYT, we see barely any articles that discuss these issues. There is little coverage of what we can do about the social exclusion that autistic individuals have faced in the past and continue to face today. This underrepresentation fits with a lack of coverage of the neurodiversity perspective and the bias towards the medical narrative since fighting discrimination, inequality and stereotyping are some aims of the neurodiversity movement (McCarthy, 2008).

The voices of people with autism are mostly missing. Although there are many personal stories, none are told by people with autism. Most stories are told from the point of view of the parents, the others being one from a coach, one from a sibling, one being a book review of a book by a person with autism, only one being a letter to the editor from a person with autism. A reporter created the series "Autism Grown up," chronicling the coming of age of a generation of autistic youths (Harmon, 2011b). However the first article only appeared as recently as 2011, it remains to be seen whether the stories talk about the bigger issues and provide a venue for statistics. The lack of voices of people with autism is analogous with what was found for Australian (Jones & Harwood, 2009) and British newspapers (Huws & Jones, 2011)

Finally by using the lens of ableism, we were able to identify that the coverage surrounding the NYT is vastly focused on ability expectations of autistic individuals that they do not currently possess and stresses their lack of abilities instead of their positive ones. Categorizing autistic individuals by their lack of abilities suggests that these abilities are expected of individuals. This expectation and preference of certain abilities over others highlights a form of ableism that expects certain species-typical, normal abilities. It reinforces the disabling view that individuals with autism do not fit a certain cultural standard that is considered "normal" and "species typical," and therefore should be labeled as "impaired" or "dysfunctional" or "lacking in ability." However what is considered to "ability" may vary from one individual to another. The medical versus neurodiversity view of autism is one manifestation of such difference. The decision to apply the ability expectations intrinsic to the medical or neurodiversity view comes with consequences. The two different schools, because of their different ability expectations, define the problem differently and seek different solutions. They impact people with autism in different ways. This can have implications for those individuals who cherish the abilities that they may have gained because from their autism or despite their autism. Depending on which ability expectations one follows influences whether resources are spent on trying to change individuals with autism to conform to the norm or 'species-typical', or whether resources are dedicated to modify the environment so people with autism can live their life as they are.

In conclusion, readers of the NYT get a skewed image of autism and what it entails. Individuals that rely on the NYT as a primary source of information get very limited information about what autism is, and what problems people with autism face. They are heavily exposed to a medical narrative, which focuses on trying to identify what is wrong with autistic individuals, what is different, what abilities they do not have. The NYT exhibits a narrative of normalization of autistic individuals instead of focusing on increasing accessibility, combating stereotypes, decreasing exclusion and increasing acceptance of people with autism.