Worlds of Autism: Across the Spectrum of Neurological Difference

8. Capturing Diagnostic Journeys of Life on the Autism Spectrum

191 8 Capturing Diagnostic Journeys of Life on the Autism Spectrum Sara Ryan Autism-spectrum disorders (ASDs) trouble conventional understandings of the concept of diagnosis. As Judy Singer, drawing on her personal experiences as a person with ASD, suggests, “Whereas the traditional image of ‘diagnosis’ is of something reluctantly sought, dreaded, resisted and imposed from outside, people with ‘marginal’ neurological differences clamor at the gates, self-diagnosed and demanding to be let in” (1999, 65). Singer seeks to capture the peculiarity of the medicalization of autism in that, for her, ASD is ontologically linked to personal identity; it is not a condition that people have, but rather an identity that people are. Yet, for many, including Singer, there is significant delay in accessing this identity, and diagnosis may not happen until adulthood. The experiences of those diagnosed with ASD in adulthood have received little attention in existing research, yet these experiences can challenge narrowly drawn, stereotypical understandings of autism. In this chapter, I explore notions of self, identity, and aspects of the life course through an analysis of the diagnostic journeys undertaken by nineteen people diagnosed with ASD as adults in the United Kingdom. For some, this journey marks a radical redefinition of self, offering answers to long-standing social and emotional puzzles, tensions, and dif- ficulties experienced since childhood. For others, diagnosis simply con- firms and legitimates an identity they may have already assumed (though not necessarily disclosed). Actively seeking a diagnosis of ASD in adulthood involves a complex contextual, emotional, relational, and interactive journey across a wide social terrain. It involves not only health and other professionals, but family members, friends, and colleagues, as well as an engagement with the various representations and understandings of autism , including diagnostic criteria, fiction, and autistic autobiographies. The firsthand accounts presented in the growing number of autistic 192 SARA RYAN autobiographies have been the subject of recent academic attention. Studies of gender, sociospatial inclusion, identity and disclosure, communication , culture, and the use and creation of language have all been examined through the lens of personal experience (Davidson 2007a, 2007b, 2008, 2010; Davidson and Henderson 2010). These autobiographical texts provide insight into the constitution of autistic experience and the emergence of an autistic discourse. In so doing, they go some way toward lessening the “one-sidedness” of efforts by people with ASD to fit into mainstream life and enable a greater understanding of the subject— autistic experience of everyday life—by the nonautistic majority population (Davidson and Henderson 2010). This chapter analyzes data from two qualitative-research projects, in which people with ASD were asked to talk about their experiences. Although people with ASD may prefer the written word over verbal communication , face-to-face interviews offer the possibility of exploring different aspects of participants’ experiences, and the use of prompts facilitates the generation of thick description of autistic life (Geertz 1973). Given the predominance of the diagnosis of Asperger Syndrome (AS), rather than autism or ASD, in the sample considered here, it is prudent to touch upon ongoing debates about the distinction between AS and autism (Foster and King 2003; Frith 2004; Matson and Wilkins 2008). This discussion will consider the ambiguity surrounding diagnosis of AS, particularly in relation to adults; the concept of looping (Hacking 2007); and whether the development of a reflexive self is incongruent with an autistic self. (After this discussion, I will use “ASD” nondiscriminately, as an acceptably inclusive term, to include AS.) I will then turn to an exploration of the data and, after describing the methods used, will examine why participants decided to seek diagnosis in adulthood. I follow the process of diagnosis from participants’ initial request to GPs for referral, through the diagnostic procedures, to receiving the label. The final, empirical section will look at how participants made sense of their diagnosis. The chapter concludes with a discussion of the power that an “official” diagnosis holds for participants and returns to the question of the reflexive autistic self. The Emergence of Asperger Syndrome The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) contains the criteria for the classification of CAPTURING DIAGNOSTIC JOURNEYS 193 mental-health disorders. At this writing, the DSM is currently in its fourth edition (1994). (A text revision of the fourth edition [DSM-IV-TR] was published in 2000.) AS was first included in this manual in 1994; its classi...