Letting Tourette's be: The importance of understanding lived experience in research and the clinic.

The most common clinical research question regarding Tourette syndrome focuses on tic reduction, which follows from classical 'lack of inhibition' models. Rooted in views about brain deficits, this model suggests that with higher severity and frequency, tics are necessarily disruptive and should therefore be inhibited. However, emerging calls from people with lived experience of Tourette syndrome suggest that this is too narrow a definition. This narrative literature review analyses issues with brain deficit views and qualitative research on tic context and feelings of compulsion. The results suggest the need for a more positive and encompassing theoretical and ethical position on Tourette's. The article puts forward an enactive analytical approach of 'letting be', that is, approaching a phenomenon without forcing preconceived reference structures onto it. We suggest using the identity-first term 'Tourettic'. Prioritizing the perspective of the 'Tourettic patient', it urges attentiveness to the everyday issues diagnosed people encounter and how these are embedded in further life. This approach highlights the strong relationship between the Tourettic persons' felt impairment, their adoption of an outsider's perspective, and feeling under constant scrutiny. It suggests that this felt impairment of tics can be reduced by creating a physical and social environment in which the person is 'let be' but not 'let go of'. WHAT THIS PAPER ADDS: Its theoretical position allows a more holistic view of Tourette's, integrating tics with oft-overlooked complex compulsions. The 'letting be' position also allows us to view why the presentation of Tourette's is likely to vary with gender and age of onset. 'Letting be' is a promising approach to improve a clinical understanding of Tourettic well-being over and above tic severity and frequency. It integrates quantitative research on Tourette syndrome in the neurosciences with qualitative neurodiversity literature in the medical humanities. It integrates ethical frameworks as developed in enactive philosophy with the conceptualization and treatment of tics and compulsions.

Insight in the Conspiracist's Mind.

ACADEMIC ABSTRACT: The motto of the conspiracist, "Do your own research," may seem ludicrous to scientists. Indeed, it is often dismissed as a mere rhetorical device that conspiracists use to give themselves the semblance of science. In this perspective paper, we explore the information-seeking activities ("research") that conspiracists do engage in. Drawing on the experimental psychology of aha experiences, we explain how these activities, as well as the epistemic experiences that precede (curiosity) or follow (insight or "aha" experiences) them, may play a crucial role in the appeal and development of conspiracy beliefs. Aha moments have properties that can be exploited by conspiracy theories, such as the potential for false but seemingly grounded conclusions. Finally, we hypothesize that the need for autonomous epistemic agency and discovery is universal but increases as people experience more uncertainty and/or feel epistemically excluded in society, hence linking it to existing literature on explaining conspiracy theories. PUBLIC ABSTRACT: Recent events have made it painfully clear that conspiracy beliefs can tear deep rifts in society and that we still have not found an adequate, de-escalating response to this. To understand the appeal of conspiracy theories and find new, humanizing ways to talk about them, we propose in this perspective paper to start from the universal human need to autonomously make discoveries through personal knowledge-generating actions. Indeed, psychological research shows that the aha experiences that accompany subjective discoveries create confidence in and perceived ownership of ideas that may be exploited by conspiracy theories. We hypothesize that people experiencing more uncertainty and/or epistemic exclusion in society will especially feel the need to re-establish autonomous epistemic agency and discovery. While this explanation starts from shared human experiences and practices, it also illustrates the potential of those processes to lead to a narrowed world and ossified cognition.

The Human Spectrum: A Phenomenological Enquiry within Neurodiversity.

INTRODUCTION: Autism has typically been characterized by its external manifestations rather than experienced phenomenology, with consequent impacts on both research and practice. There have recently been increasing calls for more phenomenological enquiry in autism, but little actual work reported. METHOD: A shared participatory phenomenological self-investigation was conducted, by the four authors, of lived experience across the autistic/non-autistic divide. The sample size was chosen as necessary for the feasibility and acceptability to participants of such work in this context. Roles of "researcher" and "interviewee" were purposefully alternated between participants to establish trust and reciprocity. Initial phenomenological reduction or bracketing was applied to the description and recording of each participant's intimate lived experience in a number of key domains across social relationships, the physical environment, development, and in adult life. These experiences were shared within dialogue to open them to investigation and questioning from the others, with alternating interviewer and respondent roles. A third step synthesized these shared observations across individuals into themes of continuity and difference. RESULTS: A number of emergent themes, such as the need for trust and reliability, and the impact of context on regulation of emotion, sociability, and empathy, showed striking commonalities between all participants. Other themes, such as primary sensory experience and social joining, pointed up more clear differences between autism and non-autism in development and the adult world. Themes of interest-focus and attention were marked by both commonalities and difference. CONCLUSIONS: This shared phenomenological method was taken as a first step within a new area of active investigation in autistic phenomenology. It proved successful in eliciting detailed information on self-experience. The results suggested hypotheses for a new understanding of autism within the wider "human" spectrum of experience; for instance, the common basic need for trust and social connection but striking differences in sensory experience. It suggested that some characteristics long thought intrinsic to autism, such as social mis-perception and reduced empathy, may be alternatively understood as state-dependent outcomes contingent on specific contexts and interactions. Implications are suggested for testing in further research, developmental theory, and intervention practice.

Going Beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking "What Is Autism?"

Psychiatric diagnoses such as Autism Spectrum Disorder (ASD) are primarily attributed on the basis of behavioral criteria. The aim of most of the biomedical research on ASD is to uncover the underlying mechanisms that lead to or even cause pathological behavior. However, in the philosophical and sociological literature, it has been suggested that autism is also to some extent a 'social construct' that cannot merely be reduced to its biological explanation. We show that a one-sided adherence to either a biological or a social explanation leads to a moral dilemma, a Catch-22, for autistics and for those living with them. Such explanations close the space for self-identifying as autistic and at the same time being considered to be in good mental health. They foreclose the possibility of making sense of the lived experience of (and with) autistics. In this paper we argue that such lack of space for moral imagination inherently leads to scientific stalemate. We propose that one can only go beyond this stalemate by taking an ethical stance in theorizing, one that enables better intersubjective understanding. Only on such a view can behavior and biology be linked without either disconnecting them or reducing the one to the other.