Open Society

n summary then, receiving an autism diagnosis can act as a permission slip, for belonging in the autistic community, for relief from judgement (by self and others), and for access to tailored services and workplace adjustments. However, an autism diagnosis is a double-edged sword and may also come with costs (Ruiz Calzada et al., 2012). For example, autistic people diagnosed in adulthood have reported their experience of being diminished in others’ eyes, especially in the workplace (Romualdez et al., 2021). Such negative experiences may be exacerbated if the thing that drove them to seek a diagnosis was some sort of crisis: mental ill-health or burnout. As a result, many autistic people choose not to disclose their identity at work, fearing negative effects (not without reason) and thus missing out on some of the potential practical benefits (Thompson-Hodgetts et al., 2020). Most strikingly, recent research reports that one-third of autistic doctors had disclosed to no one at all at work (Shaw et al., 2023). Another example of a diagnosis having the precise opposite of the desired effect occurs in mental health services which require a primary or solitary psychiatric diagnosis such that an autism diagnosis becomes an exclusion criterion for access.Despite the difficulties of disclosure, we have already seen that autistic people may benefit in private from the self-knowledge that comes with diagnosis. What remains unclear is the impact of that identity being not self-discovered, but bestowed by someone else: a medical professional who is most likely not autistic themselves. The potential negative impact here may be particularly harmful for children, if seeking a diagnosis has come particularly from their parents, leaving the autistic young person with minimal agency in the process. More generally, clinical diagnosis not only makes it difficult to depathologise autism, a central goal of the neurodiversity movement (Chapman, 2020), but also means that diagnostic processes are often designed to serve the system rather than the community. We see this, for example, in recent calls to reassert a narrower definition of autism, in order to reduce statistical noise in research studies (Frith, 2021; Mottron, 2021). This critical reflection on systems is not to suggest that medical professionals add no value – far from it. Clinicians bring expertise based on their experiences with multiple and diverse autistic people over many years, their knowledge of the research literature, and of health and social care resources. Regardless of the expert insights and warm support that clinicians frequently bestow on their patients, the phenomenon of clinical diagnosis ensures that power over who is autistic, and how autism is defined, sits firmly in the hands of the medical establishment rather than the autistic community. Indeed, even saying so almost certainly causes anxiety in some readers at the implied prospect of a transfer of power, or challenge to a firmly realist stance. One way out of this apparent bind is for clinicians to more consciously adopt a shared decision-making model in relation to diagnostic services, where doctor and patient work together in a joint investigation towards a mutual sense-making outcome (Elwyn et al., 2012; Lai et al., 2020).Another disadvantage, not of diagnosis itself but of the hegemony of diagnosis, is that we know access is unequal. Inequities based on race, ethnicity, culture, gender, wealth, and socioeconomic class abound in the research literature (Daniels & Mandell, 2014; Duvekot et al., 2017; Hosozawa et al., 2020; Kelly et al., 2019; Ratto et al., 2016; Thomas et al., 2012). Comparisons between nations show that diagnostic rates vary widely, indicating global inequities in diagnosis as well (Samms-Vaughan et al., 2017; Zeidan et al., 2022). As a result, requiring a diagnosis as a pre-requisite for support exacerbates and reinforces existing inequalities. Even when a diagnosis is achieved, both parents of autistic children and autistic adults report an exhausting process, stretched over a long period of time and incorporating a series of gruelling steps (de Broize et al., 2022; Huang et al., 2020). Speaking from personal experience for a moment, our process of seeking a diagnosis with our daughter when she was very young involved completing a series of questionnaires and clinical interviews in which I felt compelled to emphasise only her most difficult moments, and in which there were no room to celebrate her personality or achievements, for fear of losing access to that official validation of our experiences. Analysis suggests this experience is not unique (O’Reilly, 2021).