The research carries a small but acknowledged level of psychological stress in respect to the various modes of exploration. The traits under investigation are associated with a recognised disability - Asperger's Syndrome - and related conditions that include the term Disorder in their names. In current society there is still significant stigma attached to the concepts of mental illness or disorder (Barney, Griffiths, Christensen, & Jorm, 2009; Beckford-Ball, 2009; Jorm & Oh, 2009; Moses, 2009; Pinto-Foltz & Logsdon, 2009). During the recruiting process and as a general principle throughout the research I made effort to be as open as possible in terms of my own processes and experiences, while making it clear that I am not qualified to advise beyond that experience or to diagnose or counsel.
The survey stage of the data gathering process, using a pair of self-response tests developed at Cambridge University's Autism Research Centre (ARC) (Baron-Cohen & Wheelwright, 2004; Baron-Cohen, Wheelright, Martin, Skinner, & Clubley, 2001; Baron-Cohen, Wheelwright, Robinson, & Woodbury-Smith, 2005) was identified as the most likely cause of anxiety because it profiles personality and behavioural traits. Details of these surveys are found in the methodology section of this document along with scoring and interpretation information. Individuals with an Autistic Spectrum Disorder diagnosis consistently score in particular patterns, however the tests themselves are designed for screening rather than diagnosis and individuals may score in indicative ranges with no impairment to function (Woodbury-Smith, Robinson, Wheelwright, & Baron-Cohen, 2005). In most cases, participants found the tests interesting and expressed a slight degree of anxiety around the results. Such questions as "well, am I normal then?" were common. The results were returned to the participants almost immediately with an explanation of the scoring and range of "normality" that they indicate, using the wording from the ARC's research website, an extract of which is given below.
This questionnaire was designed to measure the number of autistic traits an individual has. The higher your score, the more traits you have. The maximum score is 50. This questionnaire is not diagnostic and is used for research purposes only. If you have concerns that predate filling out the questionnaire then please consult your family doctor. Men usually score about 17 and women score about 15. 0 - 10 is a low score, 11 - 22 is an average score, 23 - 31 is a high score and 32 - 50 is a very high score (Dept. of Experimental Psychology, n.d).
A referral pathway via an ASD support organisation was established should participants indicate concerns regarding the results of the surveys, however, in all but two cases, the results of these tests indicated cognitively "average" functioning according to the above criteria. A single participant (other than myself) scored in the very high range of autistic traits and very low range of empathy. "Allan's" story appears later in this document or can be accessed via the "related posts" links.
Systematic Self Observation processes in conjunction with video analysis and interviews may expose behaviours to the participant that may be challenging (Rodriguez & Ryave, 2002, p. 20) to self image. Some of Rodriguez and Ryave's research has focused on aspects of social interaction that has a negative association, such as "lying", "withholding compliments" or "secrets", and one can see that a greater awareness of these elements could be an issue if participants form a negative view of their own behaviour. This issue became a significant factor in relation to my own intensive autoethnographic investigations and is dealt with in the Methodology sections, but the risk to the recruited participants was considered small as participants were recording and observing behaviour within non-negative situations, specifically consultation, agreement and decision-making. A positive self-image effect is also noted in the same source as participants may become more aware of their non-verbal communication, and indeed this may be improved by the experience of self-observation.
The Informed Consent documentation made clear to participants that there was a risk of exposure to psychological stress through these processes. Ultimately however, the principle participant impacted by these stresses was myself.
Related Posts
- Surveys: The Cambridge Personality Index surveys - AQ and EQ
- The method - overview: An overview of the methodology including a short animation explaining the major methods employed and their relationships.
- Recruiting: Apart from finding suitable participants for surveys, interviews and the like, recruiting participants takes on new meaning when writing about one's self, as there are those who are implicated by association.
- ASD and Asperger's Literature: A brief overview of the major literature on Asperger's Syndrome
- Pathetic Empathic: Empathy in Asperger's is affected in complex ways, with partial impairment but significant differences in experience.
- I'm alright ...: Asperger's can be quite successfully "hidden" from the world at large through the development of coping strategies. There is a cost however...
- Statistics: Information on prevalence and distribution of ASD in the community.