Identity formation in individuals with AS 47of the loss of their identity. Individuals with AS, for example, believe their diagnosis
gives reason for their noticeable differences and ‘abnormal’ behaviours. Macleod,
Lewis and Robertson (2013) highlight the positive connection between individuals
and their AS identity, stating that individuals expressed a desire to understand and
gain knowledge about themselves, which was made more accessible through their
diagnosis of AS. Furthermore, Fein (2012) found participants in his study considered
AS to be a part of who they were rather than a separate disease or illness, with the
strong belief that without their diagnosis they would not be the same person.
The stigma and discourse imposed on groups by those outside of the group
may affect the process of identity formation due to the negativity it can create.
Nario-Redmond, Noel and Fern (2013) suggest that stigma and discourse can pose
challenges to maintaining a positive self-identity, particularly when the individual
is concerned about their differences. Although this stigma and discourse may be
deemed as powerful, it does not dictate one’s identity (Bagatell, 2007). Ellemers,
Spears and Doosje (2002) suggest that if a group is devalued or stigmatised in soci-
ety, the social identity of the individuals associated with the group is weakened and
jeopardised.
Limited attention has been given however to the importance of social identity
in individuals diagnosed with AS. Charland (2004) states that as quickly as a psychi-
atric label can be bestowed on an individual, it can be taken away or significantly
changed, creating concerns for individuals who highly identify with their diagnosis.
Several studies have looked at the role and power a diagnosis has in the construction
of a person’s identity, with findings indicating a strong sense of identity formation
around the diagnosis of AS (Giles, 2014; Macleod and Johnston, 2007; MacLeod
et al., 2013). Beart, Hardy and Buchan (2005) argue the power of label identity
has been overlooked in previous years, stating disability identity has “... become
a person’s primary identity, over-riding other identities... ” (p. 49). This aspect of
identity leads to the question as to how changes to the DSM-IV (APA, 1994) diag-
nostic criteria may affect the identity of individuals with a current diagnosis of AS.
In order to gain an insight into the meaning of AS identity formation, indi-
viduals with AS need to be provided the opportunity to voice their experience
and journey to self-acceptance. Shakespeare (1996) likens one’s identity to the “...
stories we tell to ourselves and to others” (p. 95), emphasising the necessity to
provide the individual with an opportunity to tell their story. Recent research
involving individuals with AS have moved toward involving more interviews with
the individuals to provide greater insight and understanding of the experiences
and journeys associated with their diagnosis of AS (Harrington, Foster, Rodger
and Ashburner, 2013). Dhunpath (2000) suggests that this insight can be achieved
through the implementation of a life history framework, which can provide a more
in depth and intimate account of the individuals’ experiences, viewing the topic
from a personal perspective. The remainder of this chapter will discuss outcomes
from a small research study that investigated the connection one individual had
with his AS diagnosis and the potential effects the changes in diagnostic criteria
found in the DSM-V may have had on his self-identity.