What’s in a label? An exploration of how people acquire the label ‘autistic’ in adulthood and the consequences of doing so

Abstract

Background. Since the 1960s the estimated prevalence of autism has increased. This has been accompanied with greater public awareness of the condition and a growing demand for diagnosis, particularly in adulthood. For sociologists, diagnoses such as autism play a fundamental role in modern social life. As well as organising the clinical picture for patients – determining their prognosis and treatment options – diagnoses also have the capacity to change how a person thinks about themselves and other people. Previous research has shown that obtaining an autism diagnosis in adulthood comes with significant benefits (greater self-awareness and access to support services) as well as some undesirable drawbacks (shame and a sense of helplessness). Yet a medical diagnosis is not the only way of acquiring the label. An individual can also label themselves – that is, self-identify – as autistic, and they can be labelled as such by other autistic people. To date, little has been done to investigate these other ways of acquiring the label, and more broadly the implications of being labelled autistic, by any means, have yet to be clearly theorised by sociologists. I aim to address these gaps in this study. Methods. I conducted a qualitative study in order to answer the question: “How do people come to be labelled, or to label themselves, as autistic in adulthood, and what are the consequences of doing so?” Using snowball and theoretical sampling, I recruited twenty-one autistic adults, eleven with a medical diagnosis and ten who self- identified as such, to take part in two loosely structured qualitative interviews (forty-two interviews in total). These accounts were analysed using a method called situational analysis, a form of constructivist grounded theory. Findings. I present three theoretical concepts that illustrate how people go about acquiring the label autistic and what it means to live with it. The first is the concept of the ‘sticky-slippy’ label, which is a figurative expression used to illustrate some of the properties of the label autistic. Once acquired, the label has an inherent ‘stickiness’ to it (a sense of permanence) whilst at the same time exhibiting more ‘slippery’ qualities (a fluid and shifting prominence in a person’s identity). The second concept relates specifically to people self-identifying as autistic and their reasons for doing so, which are conceptualised as four different ways: (1) somebody who self-identifies as autistic as a precursor to seeking a medical diagnosis, (2) somebody who self-identifies as autistic despite a negative diagnosis, (3) somebody who self-identifies as autistic as an alternative to a diagnosis, and (4) somebody who self-identifies as only having autistic traits. The third concept relates to the practice of autistic lay people labelling other lay people as autistic (which I call a ‘lay diagnosis’). Within this, I distinguish between ‘passively spotting’ and ‘actively seeking’ autism in others. Discussion. The ambition of this study is to provide a conceptual vocabulary for thinking about the nature of the label autistic, the different ways in which people can acquire it, and the implications of doing so. The concepts presented here may be applicable to other physical and psychiatric categories, of which autism serves as an illustrative example. The concept of the sticky-slippy label offers a means of understanding and reporting the consequences of being labelled autistic, something that is markedly absent in the current literature. The four ways of self-identification represent a sustained engagement with the growing phenomenon of people labelling themselves as autistic, which may be of interest to those researching the self-identification or self-diagnosis of other psychiatric conditions. Finally, I open the door on a potentially interesting research agenda: the act of lay people diagnosing other lay people with physical and psychological afflictions – lay diagnosis – which could sit alongside current research endeavours within the sociology of diagnosis.