On the ontological status of autism: the ‘double empathy problem’

In recent decades there has been much debate over the ontological status of autism and other neurological ‘disorders’, diagnosed by behavioural indicators, and theorised primarily within the field of cognitive neuroscience and psychological paradigms. Such cognitive-behavioural discourses abstain from acknowledging the universal issue of relationality and interaction in the formation of a contested and constantly reconstructed social reality, produced through the agency of its ‘actors’. The nature of these contested interactions will be explored in this current issues piece through the use of the term the ‘double empathy problem’, and how such a rendition produces a critique of autism being defined as a deficit in ‘theory of mind’, re-framing such issues as a question of reciprocity and mutuality. In keeping with other autistic self-advocates, this piece will refer to ‘autistic people’, and ‘those who identify as on the autism spectrum’, rather than ‘people with autism’.     

‘You’ve got autism because you like order and you do not look into my eyes’: some reflections on understanding the label of ‘autism spectrum disorder’ from a dishuman perspective

The psychiatrists and health professionals who ‘updated’ the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013 changed how ‘autism’ is meant to be interpreted. For example, Asperger’s disorder merged into an overall collective of ‘autism spectrum disorders’, rendering Asperger’s non-existent as a separate disorder. Yet the terms ‘Asperger’s’, ‘autistic’ and ‘autism’, in general, are used on a daily basis by people who have been diagnosed/labelled in this way over the course of their lives, or indeed are used by people to label others in stereotypical and prejudicial ways that leads to their marginalisation. With this thought in mind, the author briefly reflects on his own experiences of being labelled with ‘Asperger’s’ or as being ‘autistic’ (a label he rejects), whilst thinking from a ‘dis/human’ perspective, a viewpoint that seeks to unpack and challenge the dominant concepts of what it means to be human in the twenty-first century. While it is difficult to avoid being labelled in ways that lead to discrimination and rejection, a dishuman perspective offers a viewpoint against the narrow versions of what it means to be human, relating to how disability can trouble the notion of what it means to be human and indeed inform the very meaning of what it means to be human.     

Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

Discursive opportunities and the transnational diffusion of ideas: ‘brainwashing’ and ‘mind control’ in Japan after the Aum Affair

A case study in the sociology of ideas, this article refines the theory of ‘discursive opportunities’ to examine how intellectual claims cross national and linguistic boundaries to achieve public prominence despite lacking academic credibility. Theories of ‘brainwashing’ and ‘mind control’ originally began in the United States in the 1960s as a response to the growth of new religious movements. Decades later in Japan, claims that so‐called ‘cults’ ‘brainwashed’ or ‘mind controlled’ their followers became prominent after March 1995, when new religion Aum Shinrikyō gassed the Tokyo subway using sarin, killing thirteen. Since then, brainwashing/mind control have both remained central in public discourse surrounding the ‘Aum Affair’ despite their disputed status within academic discourse. This article advances two arguments. Firstly, the transnational diffusion of brainwashing/mind control from the US to Japan occurred as a direct result of the 1995 Tokyo sarin attack, which acted as a ‘discursive opportunity’ for activists to successfully disseminate the theories in public debate. Secondly, brainwashing/mind control became successful in Japanese public discourse primarily for their normative content, as the theories identified ‘brainwashing/mind controlling cults’ as evil, violent and profane threats to civil society.     

Redefining Critical Autism Studies: a more inclusive interpretation

This article explores the definition of Critical Autism Studies and its inclusion in autistic scholarship. There has been critique of recent non-autistic literature for lacking autistic authorship, leading to doubts about its epistemological integrity due to misrepresentations of autistic culture and the neurodiversity movement. This article utilises the work of Arnold, Milton and O’Dell et al. to introduce an emancipatory definition to ensure the discipline is autistic led. In the process, we discuss the nature of autism studies and what constitutes critical literature. We propose Waltz’s interpretation of Critical Autism Studies as a working definition.     

Making the familiar strange and making the strange familiar: understanding Korean children’s experiences of living with an autistic sibling

Based on the findings of a small‐scale study using visual ethnographic techniques with nine South Korean children, this article explores the role of culture in understanding autism. While autism is embedded within the ‘strange’ and ‘unfamiliar’, linked to exclusion and discrimination in Korean society, the children focussed on reframing their experiences of living with autism as ‘ordinary’. Despite the limitations of the small sample, the richness and depth of data generated by children themselves offers new insights into children’s interpretations and experiences of autism and raises interesting questions for cross cultural research in the field of disability.     

‘If I was a different ethnicity,would she treat me the same?’: Latino parents’ experiences obtaining autism services

This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: a discursively constructed ‘autism parent’ subject position that mandates ‘fighting’ service systems to ‘win’ autism services for children, originating from White middle-class parents’ socioeconomic resources and social capital; a neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and a media and institutional ‘cultural deficit’ discourse that attributes disparities in autism services for Latino children to their parents’ presumed culturally-based ‘passivity.’ We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.     

Storying transition-to-work for/and youth on the autism spectrum in the United States: a critical construct synthesis of academic literature

We explored how academic literature constructs the ‘worker with autism.’ Drawing on a systematic review of transition to work for youth with disabilities, we analyzed how 17 articles constructed ‘autism,’ ‘work,’ and the ‘worker with autism.’ We identified two argumentative approaches: the intervention story and the complex story. Intervention stories centered autism as a problem in need of treatment and work as a simple, positive endeavor. Complex stories offered various and more positive accounts of autism alongside broader notions of work. We recommend that academics experiment with writing which expands work (and career) possibilities for youth situated on the autism spectrum.     

‘Spirits,dancing in the flesh’: choreography and organisation

ABSTRACT

The body in organisations has received considerable scholarly attention, whilst the moving body and the ‘flesh’ has largely been overlooked. ‘Flesh’ for Merleau-Ponty connects the body and the world and supposes not an immobile, but moving body. We explore flesh as a movement-related, kinaesthetic phenomenon through a movement/dance-based method and interviews with professionals from a hospitality/service organisation. We apply the notion of ‘choreography’ from dance studies, composed of the elements of ‘writing’ (graphós) and ‘movement’ (chorós). Our findings show that fleshly movement interaction creates invisible structures, or choreographies, that are inscribed into bodies and tacitly confine organisational interaction (‘writing’). Bodies learn to relate to each other through perceptual interpenetration and kinaesthetic empathy and co-create the choreography (‘moving’). Fleshly movement interaction is a submission to choreographies fulfilling the organisational need to reproduce bodies capable of carrying out certain movement imperatives, which however provides momentary openings through the use of kinaesthetic empathy.     

Tracing disorder across theories of autism,empathy, and mental health care

Abstract

Categories of mental disorders are generally understood through a biomedical paradigm of clinical research, diagnosis, and intervention. Here, diagnoses operate as professional tools, facilitating care organization and information exchange across diverse social contexts. In this article, I focus on how the diagnosis of autism-spectrum disorder operates in this manner. Autism conceived as a biomedical disorder is then contrasted with proposals by the neurodiversity movement, who understand core qualities of autism as alternative expressions of otherwise normal processes of brain development. Finally, I supplement these conversations with insights from Gerald Edelman’s theory of neural plasticity and Felix Guattari’s paradigm of ethico-aesthetic care. Understood together, these allow mental disorders and community care generally to be reconceived in terms of networks of expressive, embodied, and dynamically embedded rhythms that transcend individual persons. This serves, additionally, to illustrate a concept of empathy that traverses neurological, psychological, and sociocultural domains.     

First-hand Accounts of Emotional Experiences in Autism: a qualitative analysis

Internet-based first-hand accounts of five people who describe themselves as 'high functioning autistic' were analysed using a thematic analytic approach. Four central themes were identified. These were a sense of alienation, a sense of frustration, depression as a central emotion, and a pervasive sense of fear or apprehension. The findings not only imply that emotional issues are important and relevant to people with autism, but there is an implication that the predominant experienced emotions are unpleasant ones. This is in contrast to much of the literature on autism that points to the absence or lack of emotion compared to non-autistic controls. Issues of generalisability to a wider population of people with autism are discussed.     

Are all communities communities in the mind?

Studies of community undertaken over a period of some forty‐five years by the author and his colleagues are re‐considered to show how the significance of ‘communities‐in‐the‐mind’ has been inadequately appreciated. The distinction made by Clifford Geertz between ‘experience‐near’ and ‘experience‐distant’ is used to sharpen up certain assumptions and approaches of community sociologists, including Frankenberg. Some possible explanations for the decline in the perceived importance of comminity studies from the late 1960s are discussed in the context of the growing centrality of social class in sociological analysis in the 1970s and 1980s. Reference is made to recent research on personal communities by Liz Spencer and the author to illustrate how an ellision between ‘experience‐near’ and ‘experience‐distant’ approaches may be achieved. It is concluded that the imputed community‐on‐the‐ground, often based on materialistic assumptions, should not be conceptually privileged over the real community‐in‐the‐mind.     

Critical autism studies: exploring epistemic dialogues and intersections,challenging dominant understandings of autism

In this paper we explore how our cultural contexts give rise to different kinds of knowledges of autism and examine how they are articulated, gain currency, and form the basis for policy, practice and political movements. We outline key tensions for the development of critical autism studies as an international, critical abilities approach. Our aim is not to offer a cross-cultural account of autism or to assume a coherence or universality of ‘autism’ as a singular diagnostic category/reality. Rather, we map the ways in which what is experienced and understood as autism, plays out in different cultural contexts, drawing on the notion of ‘epistemic communities’ to explore shifts in knowledge about autism, including concepts such as ‘neurodiversity’, and how these travel through cultural spaces. The paper explores two key epistemic tensions; the dominance of ‘neuro culture’ and dominant constructions of personhood and what it means to be human.     

The social world as will and idea: Schopenhauer's influence upon Durkheim's thought

The starting-point for this analysis is a remark made by André Lalande. that Durkheim was so enamoured with Schopenhauer's philosophy that his students nicknamed him ‘Schopen’. The intellectual context shared by Schopenhauer and Durkheim is explored, especially with regard to the opposition between the id-like ‘will’ and the mind. Schopenhauer's influence upon Durkheim's contemporaries is examined briefly. Then, this new context for apprehending Durkheim's thought is applied to selected problems in Durkheimian scholarship, problems that have to do with the dualism of human nature, perception, the unconscious and the unity of knowledge relative to the object-subject debate. The implications for sociological theory are also discussed.     

The use of email‐facilitated interviewing with higher functioning autistic people participating in a grounded theory study

This paper explores the inclusive potential of computer‐mediated communication (CMC) for a ‘hard to reach’ group of research participants, specifically people at the higher functioning end of the autistic spectrum. Drawing on the literature pertaining to the fields of autism, CMC and research methods, as well as the first author’s experience of using email as a means of conducting interviews, the paper will discuss the epistemological, methodological and practical issues raised by the use of this method of collecting data from higher functioning autistic people, as well as its suitability in the context of a study guided by grounded theory.     

Sovereignty and the other in Ecuadorian nationalist discourse

This article explores how exhortations for national unity are intrinsically linked to the symbolic displacement of a problematic other through an examination of elite Ecuadorian nationalist discourse and its construction of Indigenous activists as internal enemies. Specifically, this article looks at the role that the 2008 border row between Ecuador and Colombia played in publicly legitimating a concept of Ecuadorian citizenship rooted in racial homogeneity. Ecuador's northern border served as an ideal mechanism for performing the Ecuadorian state's authority to establish the internal borders that separated ‘citizens’ from ‘enemies’. These performances of state legitimacy highlighted Ecuador's victimisation by a more powerful neighbour/imperial proxy as a means for building regional empathy, while reinforcing the legitimacy of the Ecuadorian government to marginalise Indigenous social movements as a means to symbolically assert ‘national unity’.     

‘The domino effect’: pathways in and out of homelessness for autistic adults

Autistic adults may be at increased risk of homelessness due to the association between autism spectrum disorders and poor socio-economic outcomes. In particular, social vulnerability, unemployment, and difficulty interacting with services can be catalysts for homelessness, compounded by lack of diagnosis and appropriate support. This article presents the narratives of two autistic adults, known as ‘Max’ and ‘Peter’, who had experienced homelessness. They explain the factors which led them to become homeless and those that aided their rehabilitation. The article argues that whilst Max and Peter were susceptible to the socio-economic disadvantages which affect adults with autism in various ways, the resilience and determination displayed in their narratives countered traditional stereotypes of resistance to change. Furthermore, it is suggested that homelessness is not an outcome of autism, but of the disabling barriers autistic adults face throughout their lives.     

Alzheimer’s disease: psychiatric or neurological disorder?

The aim of this contribution is to provide a few historical and conceptual insights on the question of the impact of current developments in the neurosciences on the concept of psychiatric disease. Alzheimer’s disease is a good example when considering this important question. On the one hand, Alzheimer’s disease has a somewhat ambiguous status in terms of disorders affecting the mind or the psyche. This ambiguous status is illustrated by the fact that one commonly qualifies Alzheimer’s disease as a ‘neuropsychiatric’ disorder, because it cannot easily be classified as either a ‘neurological’ or ‘psychiatric’ disorder. On the other hand, the concept of Alzheimer’s disease was created at the beginning of the twentieth century, as the neurosciences were beginning to take shape themselves as scientific disciplines. To compare Alzheimer’s original ideas with current conceptions may thus help us to precisely specify current developments in the neurosciences.     

The politics of fear and empathy: emotional ambivalence in ‘host’ children and youth discourses about migrants in Cyprus

This article looks at the emotion discourses among 30 Greek-Cypriot children and youth interviewees when they describe their feelings about migrants in Cyprus. It looks at how migrant representations and narratives are highly emotional constructions that children and youth utilize to make sense of their views about how migrants are different or similar to themselves. In particular, the article focuses on the simultaneous contradictory positions and feelings of fear and empathy. Two important implications for intercultural education are discussed. First, it is suggested that it is valuable to acknowledge that the emotion work required from ‘host’ children and youth in their interactions with migrants should not be taken for granted. Second, rather than painting a ‘negative’ or ‘positive’ image of children and youth’s responses to migrants – which categorizes children and youth in simplistic ways – it might be more productive to examine how their emotions are linked to ambivalent discourses and inform actions in negotiating the presence of the other and one’s sense of belonging.