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More Than a Thing to Ignore: An Interview with Tito Rajarshi Mukhopadhyay
... 23,38,39 Autistic adults, in contrast, have long challenged the viewpoint that casts autism as the barrier to relationships, rejecting the damaging stereotypes of not wanting companionship 40,41 or not feeling empathy. [42][43][44][45][46][47][48][49][50][51][52][53][54] They are supported by researchers who have demonstrated heightened affective empathy and a desire for social relationships in autistic people, [55][56][57][58][59][60][61] drawing attention to repeated interpersonal trauma as the primary factor for some autistic adults' hesitancy on entering new relationships. [62][63][64] Epistemic injustice, 65 diagnostic overshadowing, 66 and the double empathy problem 67 may be at the root of this discrepancy between viewpoints. ...
Background:
Research in psychotherapy and counseling theory has shown the importance of a strong therapeutic relationship. However, in the context of working with autistic adults, the relationship appears to be de-emphasized, or "different approaches" are recommended without specifying these. Neglect of relationship building may contribute to autistic adults' negative experiences with health care professionals identified in previous studies.
Methods:
I interviewed 17 autistic adults about their relationship building experiences with a wide range of professionals primarily from mental and medical health backgrounds. I also interviewed two mental health counselors and one psychologist who had experience working with this client group and had been recommended by autistic participants. I elicited best practice recommendations from all participants. I analyzed the data in an interpretive-interactionist framework and present them through creative analytic practice.
Findings:
I address one major theme in this article: the importance of Rogerian/person-centered relationship conditions. All had to be practiced in an enhanced way: (1) Enhanced congruence could be demonstrated through therapist self-disclosure and refraining from phony relationship building "techniques" such as vocal adjustments. (2) Enhanced empathy could be demonstrated through genuine listening and accurate interpretation; however, interpretation needed to be phrased tentatively. (3) Enhanced unconditional positive regard could be demonstrated through explicit verbal expression, practical demonstration, and remembering.
Conclusions:
Results largely mirrored research with non-autistic populations: different approaches were not needed for relationship building. Participants emphasized the importance of Rogers' person-centered conditions and described pivotal relationship building moments associated with enhanced expression of these conditions.
... 20 These representations not only stigmatize autistic people but also ignore the many voices from the autistic community who insist that a lack of empathy is not part of their neurotype. [21][22][23][24] Indeed, resources created by autistic adults describe their often 222 HUME AND BURGESS intense experience of all types of empathy [25][26][27][28] and criticize empathy-deficit theories as the most harmful and stigmatizing of all theories of autism. 29,30 This stigma is primarily rooted in autism orthodoxies that spring from the medical model of disability, which has traditionally dominated autism research, delivery of services, and interventions, and has been widely critiqued for being ''exclusively etic and explicitly oriented to finding and eradicating flaws through therapy, treatment, or training.'' ...
Unlabelled:
Academic literature has long associated autism with empathy deficits. Although this view has been attenuated over time to include only cognitive empathy, earlier perceptions continue to influence popular representations of autism and screening/diagnostic tools. As a result, empathetic autistics may be prevented from accessing diagnosis, and those with a diagnosis may experience internalized stigma or violence under the guise of therapy. There are, however, some autistics who do self-identify as having empathy difficulties. The purpose of this perspective piece was to first trouble the view of empathy "deficit" as intrinsic within autism and consider alternative explanations and, second, to more deeply consider post-traumatic stress disorder (PTSD) as a factor for autistic people who self-identify as having empathy difficulties. Using both literature and author narrative, we argue that autistics are more likely to experience trauma and more vulnerable to developing PTSD, but less likely to receive a diagnosis of PTSD than nonautistics, as their PTSD-related symptoms, such as a lack of affective empathy, may be conflated with autism traits. Our main recommendations are: (1) future studies should investigate the possible interactions between autism, trauma, PTSD, and affective empathy, determining whether autistic adults with PTSD may recover affective empathy following therapy; (2) clinicians should look beyond autism if their client identifies a lack of affective empathy as part of their challenges; (3) and clinicians should adapt diagnostic procedures for PTSD in autistic adults to accommodate those with alexithymia, and exercise caution when using screening tools for autism, allowing empathic autistic adults to access diagnosis.
Lay summary:
What is the topic of this article and why is it important?: Many people believe that autism causes a lack of empathy. This belief is a problem because it denies the lived experience of autistic adults and makes them appear as less than human. It can also lead to violence against autistics, and it can mean that empathic autistic adults miss out on an autism diagnosis. As a result, they may not be able to access necessary supports. This situation may cause suffering for autistic adults.What is the perspective of the authors?: R.H. is an autistic woman diagnosed in adulthood, who is often overwhelmed by too much empathy. She worked as an employment mentor for autistics and is now a PhD candidate researching relationship-building between autistic service users and their support professionals. H.B. is an autistic man diagnosed in childhood. As a teenager, he was also diagnosed with post-traumatic stress disorder (PTSD), a mental disorder caused by trauma. He did not feel any empathy for most of his life and felt very distressed by this, as he thought that it was a permanent trait of his autism. However, he started feeling empathy after trauma therapy and falling in love. Both authors believe that autistic adults can experience all forms of empathy.What arguments do the authors make?: The authors cite research that shows other reasons which may explain the autism-empathy myth: (1) nonautistics may not recognize empathy in autistics because of mutual differences, (2) nonautistics may not believe autistics who say they have empathy because old research suggested that this is impossible, and (3) empathy research on autistics may not be correct because it uses inappropriate methods. The authors then suggest that unrecognized PTSD may be the reason why some autistics have difficulties in this area. They think so because PTSD can shut down emotional empathy. Autistics are more likely to experience trauma, more vulnerable to developing PTSD, and less likely to receive a diagnosis of PTSD than nonautistics.What do the authors recommend?: 1.Researchers should work with autistic adults who report difficulty in feeling empathy to determine whether they may have PTSD and/or recover empathy after trauma therapy.2.Professionals who support autistic adults should look beyond autism if their client identifies a lack of empathy as part of their challenges.3.Clinicians should treat questions relating to empathy with caution when using autism screening/diagnostic tools, allowing empathic autistic adults to access diagnosis and appropriate supports.How will these recommendations help autistic adults now or in the future?: We hope that this will lead to better support for autistics who have PTSD, and less biased referral and diagnostic procedures for those who do not. We also hope that autistic adults might feel less stigma by suggesting PTSD, not autism, as the underlying cause if they have difficulties feeling empathy.
... 3 Examples of such interventions are: Reminiscence Therapy (Woods et al. 2005 minimal-verbal, non-verbal or other-verbal is imbued by the deficit model and mainly focuses on the methods and effects of therapeutic interventions. Experiences of non-, minimal-or other-verbal people are hardly addressed, and their voices are rarely included in what we understand as knowledge-formation (Biklen 2005;Manning 2016;Quinn 2017Quinn , 2019Savarese 2010). ...
This paper draws on the making of a short video, called Swinging Together, produced in the context of an artistic participatory research project with people communicating beyond words. Our aim is to investigate how new materialist theories disrupt the production of ‘voice’ while working with a person labeled as ‘non-verbal’. We critique dominant functionalist and medical perspectives which reify ‘non-verbal’ only
as a lack. In disrupting ‘voice’, we learn how important it is not to search for a magical closure, a final singular form, or (special) method with instructions to follow, but to focus on the relational and procedural. Concepts as ‘leading-following’ (Manning 2009) ‘voice without subject’ (Mazzei 2016) and ‘bodying’ (Manning 2016) shape our encounter with Heleen, an 18-year-old young woman commonly considered as autistic, non-verbal, strange, and out of place. In scrutinizing concrete practices which she desires we are searching to make sense of how Heleen experiences the world.
... Selv om autismen kompliserer livet hans, anser ikke Mukhopadyay den som en forstyrrelse. I stedet inviterer han nevrotypiske personer til å utforske sine egne begrensninger -for eksempel, sin ganske begrensete evne til å akseptere at andre, slik som autistiske personer, kan ha andre behov, ønsker og prioriteringer enn dem selv (Savarese 2010a(Savarese , 2010b. ...
«Innenfra-beskrivelser» av å være autistisk i en verden der de fleste ikke er det, kan på samme tid informere og utfordre en faglig tilnærming til det som kan kalles «autistisk atferd». Denne artikkelen trekker på perspektivene i «nevrodiversitetsbevegelsen»: personer som selv har diagnoser på autistismespekteret, men som avviser at autisme er en forstyrrelse og i stedet velger å kjempe for sin rett til å være autistisk. Ved hjelp av et praktisk eksempel utforsker vi hvordan slike beskrivelser og perspektiver kan komme til anvendelse i tjenesteyting til autistiske tjenestebrukere. Vår konklusjon er at, uavhengig av om autisme forstås som en forskjell eller en forstyrrelse, kan tjenesteytere som yter tjenester til autistiske tjenestebrukere trenge å undersøke sine antakelser og faglige ståsteder nøye, dersom de skal unngå diskriminerende praksiser. ------ Artikkelen er publisert i oktobernummeret av Autisme i Dag (2019), og er en oversatt versjon av en fagfellevurdert fagartikkel: Owren, T. & Stenhammer, T. (2013). Neurodiversity – accepting autistic difference. Learning Disability Practice, May 2013, No 4.
... Selv om autismen kompliserer livet hans, anser ikke Mukhopadyay den som en forstyrrelse. I stedet inviterer han nevrotypiske personer til å utforske sine egne begrensninger -for eksempel, sin ganske begrensete evne til å akseptere at andre, slik som autistiske personer, kan ha andre behov, ønsker og prioriteringer enn dem selv (Savarese 2010a(Savarese , 2010b. ...
‘Insider’ descriptions of living with autism in a world where most people are not autistic may at the same time inform and challenge a professional approach to what can be termed as ‘autistic behaviour’. This article draws on the perspectives of the ‘neurodiversity’ movement, people who themselves have diagnoses on the autistic spectrum but reject that autism is a disorder, choosing instead to fight for their right to be autistic. The authors include a case study to explore how such descriptions and perspectives can be applied to services supporting an autistic service user. They conclude that, regardless of whether autism is seen as a difference or a disorder, care staff providing services to autistic service users may need to examine their assumptions carefully if they are to avoid discriminatory practices.
... To facilitate more fluid typing, Jamie regularly used a metronome, a therapy that Parkinson's patients use to overcome their own movement challenges. In a published interview with me, Tito all but says that William Blake, the eighteenth century British poet, taught him how to tie his shoes (Savarese, 2010b). Wrapping the tetrameter of a beloved poem around his fingers, he coaxed them to execute the necessary movements. ...
This triad of clinicians and researchers has been advancing a sensorimotor perspective on autism for years; at last, the scientific community is beginning to catch up. Since the article's initial publication in Disability Studies Quarterly, the sensorimotor hypothesis has garnered even more support (Donnellan et al., 2010). For example, a meta-analysis from 2010 concluded, “ASD is associated with significant and widespread alterations in motor performance” (Fournier et al., 2010). The article went so far as to propose that motor differences constitute a “core element” of autism and that “interventions aimed at improving … motor coordination (i.e., gait and balance, arm functions, and movement planning)” should be considered. A study from 2011 found that gross and fine motor differences in autistic children increased significantly with “each 6-month period of chronological age” (Lloyd et al., 2011). It recommended “addressing motor development in early intervention treatments.” And a study from 2012 reported that “motor skills were substantially impaired among ASD-affected children and highly correlated with autistic severity and IQ” (Hilton et al., 2012). By looking at the siblings of autistic children and finding in them no equivalent impairment, the study was able to directly link sensorimotor disturbances with ASD. It, too, contended that motor impairment is a “core characteristic” of autism and that treatment should reflect this fact. The tide has clearly shifted with respect to the sensorimotor hypothesis; what was once dismissed out of hand by an earlier generation of autism researchers is now increasingly being taken up for its superior explanatory power.
The dominant discourse surrounding neurodevelopmental conditions such as autism and ADHD emphasizes biological explanations. Neurodevelopmental conditions are conceived as different types of brains, the result of different types of genes. This way of thinking is present both in medical research and in clinical practice. Indeed, it is widely acknowledged that the idea of having a biological diagnosis helps people see beyond blame and guilt. It aids acceptance. However, simplistic approaches to biology risks neglecting the experiences and stories of autistic people in favor of finding etiological causes. At the same time, there is growing awareness that risks, functioning, and resilience are not solely defined by genes and brains but have a cultural and experiential component as well. Furthermore, atypical cognitive trajectories are not straightforwardly associated with poor outcomes. In this paper we describe the concept of developmental diversity as an alternative to more categorical approaches to neurodevelopmental conditions. We explore how dynamic models of life offer possibilities to look at neurodevelopmental conditions differently: rather than seeing autistic people as people with fundamental flaws in their genes or software faults in their brains that have to be explained, autism appears as a phenomenon that exists in interaction with the context, as a meaningful reaction to the environment. We explore what it would mean for research to go from a diagnosis-based approach to a developmental diversity approach that will define wellbeing and functioning in a more granular way across developmental trajectories. We argue that this would mean incorporating lived experiences into biological research and going beyond genes-environment dichotomies. Next to yielding a more complete picture on the phenomenon of autism, we describe how an approach that takes developmental diversity as a starting point offers a new way to look at existing challenges of autism research, such as how to deal with the significant overlap between diagnosis. Our hypothesis is that thinking with developmental diversity rather than categorical difference both represents an opportunity for a more inclusive society, and fundamentally can alter the way we perform research. As such, it is in line with requests of neurodiversity and disability movements.
This is a translation of the introduction and conclusion of an in Dutch published book.
Autism in Plural focuses on the contemporary proliferation and popularity of published self-narratives by people diagnosed with autism spectrum disorder. These self-narratives, also called “autie-biographies” or “autie-narratives”, are all concerned with the question: “what does autism mean for me as a subject?” This book therefore focuses on the way in which people deal with the label of autism spectrum disorders, rather than on the discussion of the nature or reality of the condition. In other words, the emphasis lies on what, following Alison Kafer (2013), can be called “autism as a set of practices”. This leads us to the question whether practice – the way of dealing with a label – can influence or have effects on the diagnostic category.
Of course, there are many different ways in which people can deal with a diagnosis, but the sheer number and the popularity of autism self-narratives indicates that writing about one’s own experience is one way or strategy. The question that arises is where this urge to express the self comes from. Who or what triggers us to talk/write/draw/dance about our experience and ourselves? Writing and self-expression can be private matters, a therapeutic activity, but the act of writing (and self-expression in general) is not self-evident. The relation with language, communication and narrativity is for many reasons highly complex for people with autism.
Apart from the practice of writing, this book also pays attention to the product that results from this practice of self-expression. When someone publishes a self-narrative, both off and online, she enters into the public sphere and the self-narrative becomes part of broader cultural phenomena, such as the memoir boom and the therapeutic self-help ethos. This entails that it must regarded in relation to existing narrative patterns, genres, a creative industry and an audience. This complex relation between writing practice and writing product is extremely interesting and leads to the following key question: How do autie-narratives function as cultural products and as subject-constituting practices that generate categories of identity, make them recognizable and reproducible on the one hand, and question, problematize and undermine them on the other hand.
Described by Aristotle as the most vital of senses, touch contains both the physical and the metaphysical in its ability to express the determination of being. To manifest itself, touch makes a movement outwards, beyond the body, and relies on a specific physical involvement other senses do not require: to touch is already to be active and to activate. This fundamental ontology makes touch the most essential of all senses.
This volume of ‘Law and the Senses’ attempts to illuminate and reconsider the complex and interflowing relations and contradictions between the tactful intrusion of the law and the untactful movement of touch. Compelling contributors from arts, literature and social science disciplines alongside artist presentations explore touch’s boundaries and formal and informal ‘laws’ of the senses. Each contribution unveils a multi-faceted new dimension to the force of touch, its ability to form, deform and reform what it touches. In unique ways, each of the several contributions to this volume recognises the trans-corporeality of touch to traverse the boundaries on the body and entangle other bodies and spaces, thus challenging the very notion of corporeal integrity and human being.
In the preface to his best-selling book An Anthropologist on Mars, Oliver Sacks contends that he is no ordinary doctor/author. “I have taken off my white coat,” he declares, “deserted, by and large, the hospitals where I have spent the last twenty-five years … feeling in part like a naturalist, examining rare forms of life; in part like an anthropologist, a neuroanthropologist, in the field—but most of all like a physician, called here and there to make house calls, house calls at the far border of human experience” (xx). The case studies that make up the book are thus intended less as explorations of neurological pathology than sympathetic portraits of human diversity. Yet the good doctor wants it every which way. His shifting metaphors and anachronistic fantasy work to humanize the scientific authority required to tell these stories, but the authority itself is never renounced, nor is its connection to a pathologizing impulse. Indeed, both remain in the kinder, gentler figure of the physician or anthropologist. Apparently oblivious to the oppressive history of anthropological endeavor, Sacks, for example, reinscribes the center/margin binary that makes colonialism possible, exactly as he would have us believe in his folksy goodwill.
Autistic people are empirically and scientifically generalized as living in a fragmented, alternate reality, without a coherent continuous self. In Part I, this book presents recent neuropsychological research and its implications for existing theories of autism, selfhood, and identity, challenging common assumptions about the formation and structure of the autistic self and autism's relationship to neurotypicality. Through several case studies in Part II, the book explores the ways in which artists diagnosed with autism have constructed their identities through participation within art communities and cultures, and how the concept of self as 'story' can be utilized to better understand the neurological differences between autism and typical cognition. This book will be of particular interest to researchers and scholars within the fields of Disability Studies, Art Education, and Art Therapy.
Thinking Spatially, Speaking Visually: Robert Wilson and Christopher Knowles
Telory D. Arendell
Abstract
Director Robert Wilson and autistic poet Christopher Knowles produced several cutting-edge theatre pieces that Wilson refers to as ‘operas’ because they combine live music, dance, spectacular imagery, and unusual dramatic storylines. Arendell believes these productions to be “Autistic Operas” given their structural connection to autistic ways of processing sound, language, and rhythm. Wilson’s is a new-age opera, differing from more traditional styles of Wagnerian opera and the like. Rather, his is an opera of images, sounds, and motion that gives primacy to the sort of patterned arrangement of ideas and images in which those on the autism spectrum excel. Wilson’s A Letter to Queen Victoria (1974) and Einstein on the Beach (1976) employ autism as a new stage idiom that transformed theatre in radical ways consonant with early postmodern performance. Arendell draws on Wilson’s work with Knowles in the early years of this director’s career as one example of contemporary theatre’s appropriation of autism as an artistic vehicle for the expression of alternate musical and stage perception.
Full Text: PDF DOI: 10.15640/ijmpa.v3n1a2
This conversation began at MLA in 2012 when we recognized that cognitive approaches to literature and disability studies, two rapidly and independently developing fields, must start talking to one another. The subject is autism: how it has been divergently understood and deployed and how it can be convergently understood and deployed. Kept apart, the two fields seem vulnerable to caricature. The former sometimes applies scientific and medical insights uncritically (such as the assertion that autistics have no theory of mind and, thus, cannot read fiction); the latter sometimes advances a completely social-constructionist understanding of physiological distinction (as if stigma were the entire story of alternative embodiment). Scholars in cognitive approaches to literature need the insights of disability studies to think about mind, narrative, and agency in neurodiverse ways; scholars in disability studies need the insights of cognitive approaches to literature to give the concept of neurodiversity, which is quickly becoming a kind of platitude, some actual neuroscientific content. Talking across conventional disciplinary divides has precipitated questions that we would never have thought to ask. It has also made us hope that an ongoing conversation between cognitive approaches to literature and disability studies will transform both fields. We cannot foresee the exact shape of this transformation, but the formerly distinct trajectories already feel more intertwined.
In her recent contribution to Disability Studies Quarterly, Paula C. Durbin-Westby, an autistic disability rights activist, builds on Gayatri Chakravorty Spivak’s “Can the Subaltern Speak?” to stress the importance of the “inclusion of autistics as active collaborators in research, rather than mere research subjects to be studied and then written about, often in language that many autistic people find demeaning. We must insist,” she writes, “on being ‘speaking subjects,’ with our participation and input used in meaningful ways, rather than being ‘spoken subjects,’ a position which can lead to misinterpretation of research results and to uninformed experiments.” Would you comment on the ramifications of this practice of adapting the rhetoric of postcolonial studies to disability studies?
The postcolonial analogy can be traced back to a number of scholars, including Arthur Frank, who in The Wounded Storyteller likens medical patients to colonized peoples: the former’s bodies have been rationally conquered and their indigenous experience of illness or disability has been haughtily disregarded. In its place, an official narrative, in something like a foreign language, has prevailed, leaving patients feeling both alienated and disempowered. But over the last thirty years or so, patients, like postcolonial subjects, have begun to write back to this kind of empire. According to Frank, “Postcolonialism in its most generalized form is the demand to speak rather than to be spoken for . . . or, in the worst cases, rather than being effaced entirely” (13). The rhetoric of postcolonial studies thus helps us to think about the historical circumstances of the neurological other: the subaltern has not only learned to speak, it has also begun to organize, as the neurodiversity movement and organizations such as the Autistic Self-Advocacy Network make clear. Insisting on the right to self-determination and advancing a notion of autism as neurological difference, not pathology, ASAN has agitated for progress on a range of issues: from better education, employment, and housing opportunities to better, more respectful medical care and scientific research.
The difference between the privileged outsider view and the newly empowered insider one is, however, considerable, and because the scientific community often has trouble with what autistic writer Dawn Prince calls “the superior part of speaking” (“The Silence Between”)—namely, listening—it continues to cause damage. Think, for instance, of the common claim that autistics don’t experience empathy, which popular novels such as The Curious Incident of the Dog in the Nighttime have only further promulgated. This claim is prevalent in the many fields that make up cognitive aesthetics.1 If one actually listens to autistics, one hears a different story. Stephen Shore, for example, distinguishes between being able to feel the pain of another, which he does so well that he almost “fuses” with it, and being able to perform this venerated emotion in a conspicuously neurotypical manner.2 By moving too quickly from...
The article proposes the need for a postcolonial neurology, countering recent concerns about the dilution of the term postcolonial when used as metaphor. Adapting George Lakoff and Mark Johnson's notion of "philosophy in the flesh"—the fact that cognition is embodied, which is to say radically conditioned by physiological systems—it analyzes the nonfiction work of Tito Mukhopadhyay, an Indian writer in America whom the medical community would describe as "severely" autistic. The article contends that Mukhopadhyay's alternative embodiment gives rise to both a different sense of relation and a different way with words, each in some respects preferable to the neurotypical standard. Paying attention to Mukhopadhyay's body challenges—with proprioception, sensory processing, over- and under-inclusion of details in his apprehension of the environment, word finding, a drive to associate, a persistent animism, and synesthesia—it suggests that he is a cross-cultural, cross-sensorial migrant: a neuro-cosmopolitan armed with metaphor in a world that is often quite hostile to the neurological other. Finally, it situates Mukhopadhyay's writing squarely in the burgeoning neurodiversity movement, which, though recognizing the difficulties that autism often presents, nonetheless asks that it be treated and accommodated as difference.
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