When ‘no one’ does answer : a qualitative research critically examining autism through interviews with adult autists
|Author:||Diaz Castro, Juan1|
1University of Oulu, Faculty of Education, Department of Educational Sciences and Teacher Education, Educational Sciences
|Online Access:||PDF Full Text (PDF, 2.2 MB)|
|Persistent link:|| http://urn.fi/URN:NBN:fi:oulu-201503131161
J. Diaz Castro,
|Publish Date:|| 2015-03-16
|Thesis type:||Master's thesis
Autism is often presented as a seriously disabling neurodevelopmental brain disease, and those who suffer from it are seen as individuals trapped in themselves, confused, and unable to communicate. Current research within the Clinical Model of Disability looks into the causes and seeks a possible cure for autism. However, some communities of Autists are articulating a discourse which challenges the assumption that autism is a disorder that needs to be treated or cured. Such discourse claims that autism is merely a natural variation of the configuration of the human mind, with its unique ways of socializing, communicating and sensing, all of which need to be recognized, respected and valued. Their main argument is that by excluding the neurodiverse from the discussion of what normalcy constitutes, they are being subjected to a certain epistemological violence, which deprives them of voice and agency to contest these discourses. As a reaction to this, and to the notorious absence of an Autist perspective in special needs education courses, this thesis explores how Autists themselves see and experience their autism. The goal of the thesis is to broaden the perspective from which we look at normalcy and neurodiversity.
For the purpose of this thesis, 6 participants on the autism spectrum from Finland and the UK agreed to participate in private two-way exchanges to express their own views on autism. The data was collected through semi-structured interviews, email and other electronic exchanges. Using the principles of Qualitative Content Analysis, the data was processed into descriptive themes which showcase the different ways in which the participants see and experience their autism. Grounded on a subjectivist and poststructuralist epistemological stance, the theoretical framework of the thesis is defined within the Social Model of Disability, and the analysis and discussion of the data were carried out borrowing conceptual tools from Critical Disability Studies. The findings suggest that it is possible to experience autism in a variety of ways, including autism as an identity, as a normal human variation, as a disability because of others, as an impairment, or as a reason to feel proud.
These findings suggest that the experience of autism is open to many variations, hinting at the complexity and intersectionality of the issue. The variability in the stories of the participants suggests also that the experience of autism does not happen in isolation, but in a constant and interdependent interplay of many other factors such as cultural background, current context, socioeconomic background, gender, age, employment status, support structures or a lack of them. Although there were some common elements in the experiences that the participants shared, it can be said that the most defining feature of the data, as a whole, is the significant differences found in the way autism was experienced and described by the participants.
Autism can be experienced in a great variety of ways, depending on the specific circumstances of the individual, and the preconceptions and expectations that are present in a given sociocultural context. While Autists can be described in many different ways, in the end, being Autist is just an arbitrary label. Everyone has impairments. Everyone has cognitive capacities that enable them to do certain things, and not others. A diagnosis can offer a label for an individual, which may provide help and support for that individual. Labels tell us nothing about a person. The idea of treating autism should always be positive, if it facilitates in any way the reciprocal encounter between two people. Perhaps acknowledging the cultural aspects of the experience of disability, treatments addressing cultural preconceptions should be promoted. The best possible way to treat autism, in any circumstance, is to treat it with dignity and respect. Treating real people with dignity is always about seeing the person, and forgetting the labels. Genuinely understanding other human beings involves talking and listening to them, on their own terms, and finding out what makes them an individual, and not what makes them part of a group. This is something which speaks not about the specificities of Autists, but more about our own capacity and limitations for genuine empathy and meaningful communication.
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