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Sensory strangers: Travels in normate sensory worlds
Abstract
Sensory experience is subject to considerable political and normative pressure, often felt, but rarely theorised. Taking as a starting point Simmel’s conceptualisation of the stranger, whose ‘position as a full-fledged member (of society) involves both being outside it and confronting it’, we propose neurodivergence as a form of Simmelian sensory stranger-hood, phenomenologically, spatially, and temporally situated as a tool for critical exploration of expressions of – and discourse around – cognitive normate sensory experience. We therefore consider neurodivergent experience less as an object of study than as a perspective. Here, the writers take the collective experiences of their own ‘bodyminds’ as a source of data. This chapter therefore consists of an auto-ethnographic project with a triple aim. First, we use this exploration to consider sensory normativity, and how this may affect the ways in which neurodivergent people are able to construct themselves and their identities. Second, we propose a reading within which the ‘sensory stranger’ provides a valuable epistemic asset whose potential exceeds the ‘particularity’ of neurodivergent experience. Finally, we are interested in considering the conditions and circumstances under which neurodiverse writing methods may be emancipatory.
... Bertilsdotter Rosqvist, Örulv, et al. (2020) have noted the limitations of neurodivergent individuals working more separately in their own space, in comparison with working as a neurodivergent collective, working together in a shared neurodivergent space (Bertilsdotter Rosqvist, Örulv, et al., 2020), noting how narratives of sole autistic selves tended to replicate deficit stories. It was not until writing in a collective form in a neurodivergent shared space, alternative narratives of neurodivergence started to emerge (Bertilsdotter Rosqvist, Örulv, et al., 2020, see also Jackson-Perry et al., 2020). Similarly, Bertilsdotter Rosqvist and Jackson-Perry (2021) observed how certain spaces predominantly occupied by autistic people may still be dominated by 'non-autistic storying' of autistic experiences, as found in a study of narratives of sexuality on an online forum for autistic people. ...
... Part of the methodology was to develop the ideas in the text through a collective storytelling process where we have mixed personal reflections with theories from our different disciplinary and epistemological backgrounds. In line with the storytelling process as outlined by Jackson-Perry et al. (2020) in the context of sensory experience, as a form of data collection and analysis: ...
Lay abstract:
A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) - in truly 'neurodiverse' teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways.
... Though Adam sometimes referred to autism as a disability, not every autistic person views autism as a disability. Jackson-Perry et al. (2020) helped clarify language used in this study, noting: ...
... One strategy to reconceptualize autism from the preexisting deficit perspective to a neurodiversity perspective is to understand sensory experiences of people with autism as they explain these experiences, rather than assuming autism is something to be pathologized (Jackson-Perry et al., 2020). Because voices of autistic individuals are not often included in research or dialogue related to autism, sensory experiences are pathologized rather than understood as a neurodivergent form of communication. ...
Although there is a plethora of autism-related research, research related to transition and support needs for autistic adults remains limited. The purpose of this study was to understand the hopes, dreams, aspirations, challenges, and lived experiences of autistic adults. Academic literature has largely emphasized autism as a medical deficit, and use of first-person narratives to understand needs of people on the autism spectrum is rare. To fill this gap, I conducted a narrative study through a social model of disability lens and centered voices of autistic individuals. The narrative component of this research allowed readers to understand the subjective experiences of individuals directly from the source. This study included both academic literature and autobiographies written by autistic authors. The coauthor in this study is also an autistic adult who presented his life experiences for a central narrative. In contrast to the Diagnostic and Statistical Manual of Mental Disorders (DSM), which conceptualizes autism as a list of deficits, a number of powerful themes emerged from analysis of autistic authors’ lives: Isolation, Influence of Parents, Differences in Needs: Education and Employment, Empowerment, and Relationships. By using grounded theory analysis, these themes were contextualized via theories of neurodiversity paradigm and monotropism theory to better understand autistic experiences and needs. Furthermore, Milton’s (2012) double empathy problem reconceptualizes autistic experiences as a mutual lack of understanding of other’s behaviors by neurodiverse and neurotypical people, and the appropriate form of treatment would be to work toward understanding these dichotomous behaviors. This research recognized that only someone who is autistic can be considered a true expert on autism; thus, it is imperative researchers consult with and collaborate with autistic individuals to develop the most useful support services possible. By including autistic people in research design, implementation, and support services, academics and therapists can learn from the neurodiverse about problems that the social and cultural worlds present them with, thereby moving toward a more socially just society.
... I like to wear clothes that feel right, even if they don't always 'look' right to others, because of sensory things" (Mendes and Maroney 2019: 56). While "sensory things" are part of neurotypical trans narratives as well, they are rarely named as such, and as Jackson-Perry et al. (2020) wrote, there are politics at play regarding which sensorealities are intelligible. Lacking the rush to socially transition, and instead measuring gender embodiment against other sensations, these narratives disrupt the transition temporality of getting better. ...
The desire for transgender futures has grown exponentially in recent years, but many of these futures are traps, concealing a demand to assume normative and neoliberal priorities in exchange for citizenship and belonging. This article argues that some of these traps might be undone through autistic disruption. Dwelling with the life writing and memoir of individuals both autistic and trans, it suggests that, by choice or by circumstance, autistic-trans narratives defy the chrononormative mandate of the able-minded future. By claiming autism and gender nonconformity as mutually inclusive, foregrounding alternative sensorealities, and interrupting the incitement to get better, this article argues that cripping trans time through autistic disruption offers what Gossett, Stanley, and Burton call a “trap door”: a route of escape from the normate trans future and a way for autistic life to insist on its own continuation and survivance.
... The neurodiversity movement (which was spearheaded by autistics but includes divergent neurotypes of all kinds including dyslexia, ADD, Down's Syndrome, Tourette's, and so on) argues that human minds are just as diverse and changeable as bodies and that there is no one set way a mind should be (Rosqvist et al., 2020). Autistic activists and commentators have sought to reformulate the rhetoric around autism and change its socio-cultural image (Bascom, 2012a;L. ...
Metaphors of aliens, robots and other fantastical beings are often employed as shorthand for autistic difference. While such rhetoric can serve to dehumanise a disabled minority, the same otherworldly subjects have also provided meaningful spaces of cultural belonging, identity, and community for autistic fans. This thesis positions the fantastical screen as a space of cross-neurotype encounter where shared experiences of estrangements can be productively encountered and explored. It is led by the work of neuroqueer theorists Melanie Yergeau and Julia Miele Rodas, whose analyses of neurodivergent embodiment in social rhetoric and literary texts have enabled innovative discourses of a poetics of autism. Developing this work for the screen, I establish how cinematic and televisual techniques align with neuroqueer thinking, before delineating the ways in which this approach enables dynamic critical incursions on the understanding of autism and estrangement.
Moving to analysis, I follow autistic interest in Ridley Scott’s science fiction dystopia Blade Runner: The Final Cut, to reinterpret its postmodernist aesthetic as neuroqueer expression. The film’s cyborg characters are recast as neurodivergent individuals framed by an aesthetic attitude of empathetic attachment for atypical worldly resonance. In the TV sitcom Community, I locate a neuroqueer narrative agency in the trickster dynamic of its celebrated but under-theorised autistic hero, Abed Nadir. I analyse three episodes where Abed negotiates his neurodivergent expression via the invitation of fantastical energies, thereby positioning estrangement as a key methodology for embodying autistic difference. In conclusion, I offer the fantastic autistic and the fantastical screen as powerful allies in the articulation of neuroqueer divergence and the negotiation of cross-neurotype communication.
Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognitive deficit approach and lacked community authorship. In contrast, this article utilises a neurodiversity framework to explore ADHD as a cognitive difference through ADHDers’ experiences. Specifically, here we analyse collective autoethnographic writings from neurodivergent academic researchers writing to one other about their experiences of intensity and variable attention or interest-based attention. Through the process of collective writing, we started to rename and restory our experiences, which has enabled us to understand intensity and variable attention as a valuable facet of human diversity, with both strengths and challenges. This project offers an example of how community-based research can elucidate individual experiences as ADHD/AuDHD researchers, facilitate exploration of varied experiences with intensity and attention and increase self-awareness and ability to give and receive neuroaffirmative support.
This article is an investigation of neurodivergent reading practices. It is a collectively written paper where the focus is as much on an autoethnographic exploration of our autistic readings of autism/autistic fiction as it is on the read texts themselves. The reading experiences described come primarily from Yoon Ha Lee’s Dragon Pearl (2019) and Dahlia Donovan’s The Grasmere Cottage Mystery (2018), which we experience as opposite each other in how they depict their neurodivergent characters and speak to us as autistic readers. Through the article, we describe a formation of neurodivergent (critical) collective readings of autism/autistic fiction. The article contributes to an academic and activistic discourse around neurodivergent reader responses and power relations between neurodivergent and neurotypical readers and authors.
Historically, neurological minorities have been pressured to change their communication to accommodate neurotypical norms and stigmatized when they do not meet socially constructed expectations. In contrast, the following theoretical discussion of cross-neurotype communication competence centers neurological differences. The chapter highlights four categories as socially significant in neuro-shared spaces, for navigating cross-neurotype interactions. They include interest systems (how one engages with others and their interests), sensory sensitivity (how people experience a range of visual/tactile/olfactory/auditory stimuli in a given environment), affect display (the value placed on the production and reception of nonverbal cues), and social interaction (one’s structural preferences for interacting with others).KeywordsNeurodiversity movementCommunication competenceMonotropismSensory communicationAffectNeurodivergenceSocial stigmaNeuro-shared spacesInterest systems
The article investigates letter writing as a way to explore neurodiverse collectives, neuromixed communication and neurodiverse research collaboration. From the perspective of neurodiversity studies and translation practice/studies, the article negotiates new perspectives of inherited images of neurological selves and others, such as the non-autistic as the ‘typical’ in contrast to the ‘atypical’ autistic person. Experimenting with autistic time, allowing different sensory modalities and different approaches to time, detail and narrative, the article challenges deficit approaches to autism. Through a letter writing practice the possibilities and challenges of subjectivity, cultural translation and writing as method are examined. The article suggests that ‘counter narratives’ are important sources of knowledge as they reclaim personhood from dehumanising perspectives. By performing neuromixed conversation and dialogue with theoretical concepts, and pen paling as play as a fruitful form for responsible cross-neurotype translation, the article illuminates challenges and opportunities in neurodiverse collective writing.
Research and anecdote dealing in autistic sexual and gender identities present the picture of a group of people who may not conform to (cis)gender binaries, (hetero)sexual norms, or discrete sexual categories of a ‘heterosexual, bisexual, or homosexual’ nature. Considering that the ‘over-representation’ of sexual and gender diversity amongst autistic people requires attention, research in the field largely emphasises perceived autistic deficits to explain this phenomenon. In this way, the authenticity of autistic sexual and gender subjectivity is called into question, while both deficit readings of autism and assumptions of a stable, binary reading of sexuality and gender are left untroubled. Leaning on Halberstam’s use of failure, I challenge the grounding of autistic sexual and gender diversity in deficit, considering instead autistic experience of gender and sexual identity as valid and authentic. This approach offers epistemological, ethical, and ontological opportunities and turns the research gaze away from supposed autistic deficit, interrogating instead the often unquestioned assumptions of the ‘imperfect systems’ of sexual and gender norms. I briefly present three alternative and emergent theoretical approaches with the potential to question both what we think we know about autism and what we may be able to know about sexuality and gender through autism.
Autism is conceptualized in much scientific literature as being associated with restricted and repetitive interests, characterized by an ‘empathy deficit’, and negatively impacting social communication. Meanwhile, ‘good and healthy’ sexuality is largely considered to be a social endeavor: asexuality and sexualities defined by acts rather than by partner gender—for example kink or BDSM—are broadly pathologized. Perhaps, therefore, first-hand autistic experiences of sexuality challenge existing assumptions about ‘good and healthy’ sexualities within couplehood. As a theoretical starting point to explore this potential, we revisit Gayle Rubin’s notion of ‘sex within the charmed circle’ to ask whether autistic sexuality can ever truly ‘fit’ within this (neurotypically defined) virtuous sexual arena. We further consider the ways in which the intersection of autism and sexuality is understood and experienced in first-hand autistic accounts of sexuality within a specific context, through analysis of a Swedish online discussion forum in which autistic people discuss sexuality. In doing so we seek both to better understand autistic sexual experience, and to track and deconstruct potentially restrictive assumptions of (non-autistic) couple sexuality more generally. We also consider ways in which assumptions of deficit concerning both non-normative sexualities and autism may have a deleterious effect on autistic people and on research more broadly, limiting theoretical and conceptual understandings of autism and autistic ways of (sexual) being by a default comparison to sexual and neurological norms.
Co‐morbid mental health conditions such as anxiety and depression are extremely common in autistic adults. Vulnerability to negative life experiences such as victimisation and unemployment may be partially responsible for the development of these conditions. Here we measure the frequency of negative life experiences in autistic adults and explore how these are associated with current anxiety and depression symptoms and life satisfaction. We developed the Vulnerability Experiences Quotient (VEQ) through stakeholder consultation. The VEQ includes 60 items across 10 domains. Autistic adults with a clinical diagnosis and non‐autistic controls completed the VEQ, screening measures for anxiety and depression, and a life‐satisfaction scale in an online survey. Likelihood of experiencing each VEQ event was compared between groups, using binary logistic regression. Mediation analysis was used to test whether total VEQ score mediated the relationship between autism and (1) depression (2) anxiety and (3) life satisfaction. Autistic adults ( N = 426) reported higher rates of the majority of events in the VEQ than non‐autistic adults (N = 268). They also reported more anxiety and depression symptoms and lower life satisfaction. Group differences in anxiety, depression and life satisfaction were partially mediated by VEQ total score. This study highlights several important understudied areas of vulnerability for autistic adults, including domestic abuse, contact with social services (as parents) and financial exploitation and hardship. Improved support, advice and advocacy services are needed to reduce the vulnerability of autistic adults to negative life experiences, which may in turn improve mental health and life satisfaction in this population. Autism Res 2019, 12: 1516–1528 . © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.
Lay Summary
This study investigated whether autistic adults are more vulnerable to certain negative life experiences, and whether these experiences are related to anxiety, depression and life satisfaction. We found that autistic adults are more vulnerable to many different negative life events, including employment difficulties, financial hardship and domestic abuse. Negative life experiences partially explained the higher rates of anxiety and depression symptoms and lower life satisfaction in autistic adults compared to non‐autistic adults. Improved support services are required to reduce the vulnerability of autistic adults. Reducing vulnerability may improve mental health and increase life satisfaction in this population.
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.
Several studies have suggested that there is a link between synaesthesia and autism but the nature of that link remains poorly characterised. The present study considers whether atypical sensory sensitivity may be a common link between the conditions. Sensory hypersensitivity (aversion to certain sounds, touch, etc., or increased ability to make sensory discriminations) and/or hyposensitivity (desire to stimulate the senses , or a reduced response to sensory stimuli are a recently introduced diagnostic feature of autism spectrum conditions (ASC). Synaesthesia is defined by unusual sensory experiences and has also been linked to a typical cortical hyper-excitability. The Glasgow Sensory Questionnaire (GSQ) was administered to synaesthetes and people with ASC. Both groups reported increased sensory sensitivity relative to controls with a large effect size. Both groups also reported a similar pattern of both increased hyper- and hypo-sensitivities across multiple senses. The AQ (Autism-Spectrum Quotient) scores were elevated in the synaesthetes, and one subscale of this measure (attention to detail) placed synaesthetes within the autistic range. A standard laboratory test of visual stress (the Pattern Glare Test), administered online, corroborated the findings of increased sensitivity to aversive visual stimuli in synaesthetes. We conclude that atypical sensory sensitivity is an important shared feature between autism and synaesthesia.
This paper investigates what it is to understand human differences in terms of deficits and examines criticisms of this approach. In the past few decades, across many fields of inquiry and outside the academy there has been a surge of interest in critiquing "the deficit view" of all manner of group differences and deviations from the norm. But what exactly is meant by "deficit view" and related terms when they figure in accounts of human differences? Do critics of the deficit view claim that they are never appropriate or that particular applications of the approach are inappropriate? The aim of this paper is twofold: to identify and articulate some of the conceptual issues at the heart of debates about deficit approaches and to examine how these issues matter. Autism is my focus case. As we will see, many critiques of the deficit view of autism tend to characterize what is problematic about taking a deficit view in terms of the personal and social harm that deficit views can or do effect. One important upshot of my discussion, I argue, is that there is another kind of drawback to deficit thinking that is independent of the deficit view's potential negative personal and social consequences, a drawback that deserves serious consideration and sustained critical attention: in some instances, at least, deficit views impede scientific and philosophical progress in our understanding of the phenomena themselves. Thus, articulating and assessing deficit approaches is of practical and theoretical importance.
Drawing on ethnographic evidence from several communities of autistic adults in the UK, I explore the crucial role of the body and the senses in the enactment of autistic subjectivities. Following their initiation into autism-related social groups, members begin using such concepts as triggers, overload, shutdown, and meltdown to refer to their bodily experiences of distress. They then face the task of investing these ambiguous concepts with meaning, through nurturing an increased awareness to their body’s relationship with its material surrounding. This cultivation of sensitivity ultimately culminates in the transformation of their bodies into what might be termed autistic bodies.
Motor stereotypies are repetitive, purposeless movements that cannot be categorized into any of the known pathological movement disorders. They can be “primary,” occurring in normal children as a normal physiological variation or “secondary,” occurring in children with autism, intellectual disability, or other developmental disorders. Observation and videotaping are crucial for excluding seizures and other pathological movement disorders. They usually last for seconds to minutes and can occur spontaneously or be triggered by fatigue, excitement, or stress. Another key feature is the ability to suppress these movements by distraction or sensory stimulation. In this article, we aim to present an updated review of this topic and highlight important diagnostic tips and management pitfalls. Recognition of such movements is critical to prevent unnecessary investigations or treatments.