Katherine Allen writes, "A little secret in academia is that much research is so removed from human experience that it is eviscerated - devoid of passion" (Allen & Piercy, 2005, p. 163).
Given my area of expertise lies outside the psychology mainstream, it is not possible to examine the impact of autistic traits without looking at my own. I simply do not have the training, nor access to appropriate subjects to observe. But it is not possible to place my relationship with music, (compositional method, modes of perception, emotional engagement) and my collaborations with others in musical settings into any context without the lens of autism. A significant aspect of my study of the subject matter has been familiarisation with the body of literature on autism in general and Asperger's Syndrome in particular, and, to a lesser extent with the formal methodologies of psychology scholarship. Reading into observation techniques and analysis has given me a limited view through the interdisciplinary window. Ultimately however, it has been the use of autoethnography that has helped to clarify these concerns and has proven effective in providing insight into both fields. While qualitative methods such as action research and reflective practice (Gilbert, 1994; Kolb, 1984; Preston, 1988; Sawyer, 2003; Schoen, 1995) have been in use for some time in music research, this relatively new approach has allowed me to indulge and engage the passions of music and learning, and the personal desire to find myself.
Perception of music, both in mechanism and affect has received significant attention, notably by psychology researchers, but also musicologists, sociologists and a range of other disciplines. Similarly, studies of compositional process based on analysis of the final product are too numerous to mention, and studies exist that include the perspective of composer in a technical sense (eg. Bennett, 1976). However the link with an "abnormal" cognitive aspect is not made, and rarely is the lived experience of music making relative to this explored in first person detail. Autoethnography again provides an approach to address a number of these areas simultaneously, through the process of continuously relating the personal to the cultural - identified as a core methodological attribute (Adams, 2008; Anderson, 2006; Ellis, 2000; Denzin, 2006; Ellis, 1999; Foster, McAllister & O' Brien, 2006; Holt, 2003; Lee, 2006; Maguire, 2006; Muncey, 2005; Richards, 2008). The recent publication of Music Autoethnographies (Bartleet & Ellis, 2009) to which I contributed a chapter (Webber, 2009) marks the beginning of what is hopefully a rising tide.
As indicated previously, Chamak's article in the Journal of Psychotherapy and Psychosomatics (Chamak, Bonniau, Jaunay & Cohen, 2008) was a turning point in choosing an approach for this study. In the article the authors note that studies of autism tend to focus on externally observed features rather than on the experiences of autistic people themselves. Their paper analyses a series of sixteen autobiographical accounts, looking at the use of language, the emphasis on particular perceptions of difference, narrative structures and other elements, concluding that the way autistic individuals understand themselves, and what they see as impairment or impediment varies significantly from the way in which diagnosis is undertaken and from the focus of intervention strategies. They make an impassioned plea for psychologists to take more notice of such autobiographical accounts, and for these to be considered in the next review of diagnostic criteria. While self-report is a common tool in assessment of various traits in the autism literature, there are no cases that I have become aware of where an autistic individual has set out to explore their own cognitive self and the expression of traits in a specific real-world situation. Happe notes that it is a common aspect in autobiographies by autistic persons that the writers appear to be unaware of which aspects of their experience are unique and which are universal (in Frith, 1991, p. 210), and this has been born out by my own experience. Smukler (2005) also indicates that while, "the communication we can expect from people with autism labels is so often atypical, ... meaning is generated socially, namely, at a site where Self and Other meet and interact". Through the mode of autoethnography, the voice of the self is centred and constantly in conversation with the social other.
Rose Richards looks to autoethnography as a way of avoiding the problem of objectification by others of individuals who have an illness or "difference" (Richards, 2008). She notes that description of the "other" can tend to result in a description of the condition, rather than the impact of the condition upon the person. Any narrative collected is simply data to building a homogenised notion of the condition itself. This is an echo of Chamak et al's (2008) observations noted above, that the lived experience may emerge as different to the observed one. "The expert on the lived experience of disability or illness is not the clinician, but the person experiencing disability or illness" (Richards, 2008, p. 1717).
The view of the insider in autism studies, is also called for by the insiders themselves. An interesting summary of "theories of autism" appears on a blog titled Mixing Memory (Autism and Theory of Mind, 2005). The crux of the article is a critique of various aspects of the theory of mind, male brain and central coherence theories of autism in general. It is written by an author who is non-autistic but who has had considerable contact with a practitioner who researches and treats high functioning autistic individuals. The critique is at times scathing of the methods of analysis reviewed, particularly the male brain theory, although I suggest that the language used indicates a misunderstanding of the particular scientific method (observe, hypothesise, test, analyse). What I find compelling about the blog is the comment section, which begins with a lengthy post from "Therese", an Asperger who is clearly well read on the subject. She offers an insider perspective on both the theories presented and the critique, decrying the attempts of "non-autists" to understand "autists" as being similar in principle to the difficulties those with autistic conditions have understanding the rest of the world. She finishes with the thought that the reality "will remain obscured if the research remains one-sided." The original author, "Chris" then responds by indicating that, despite considerable contact with autism researchers, for him there is "nothing quite like getting an insider's perspective".
Once the main question addressing my music and my autistic traits had been formulated, the choice of a main mode of exploration was a logical one. Autoethnography has been augmented by observation of self and others and by surveys and interviews, but it has remained at the centre of the study. The full description of the method has its own section.
- Autoethnographic Approaches: Autoethnography is not without its detractors and controversies.
- Evoking Anxiety: Are evocative autoethnography and an impairment in empathy an impossible combination?
- Beginnings ...: A little background. How did all this start?
- Statistics: Information on prevalence and distribution of ASD in the community.
- Surveys: The Cambridge Personality Index surveys - AQ and EQ
- Ethics - overview: A brief introduction to the ethical considerations of the research.
- Sharing Stories: Relational ethics and "life sharing".