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Towards an Ethics of Autism: A Philosophical Exploration

Towards an Ethics of Autism: A Philosophical Exploration Kristien Hens
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Kristien Hens succeeds in weaving together experiential expertise of both people with autism and their parents, scientific insights and ethics, and does so with great passion and affection for people with autism (with or without mental or other disabilities). In this book she not only asks pertinent questions, but also critically examines established claims that fail to take into account the criticism and experiences of people with autism.
Sam Peeters, author of Autistic Gelukkig (Garant, 2018) and Gedurfde vragen (Garant, 2020); blog @ Tistje.com

What does it mean to say that someone is autistic?

Towards an Ethics of Autism is an exploration of this question and many more. In this thoughtful, wide-ranging book, Kristien Hens examines a number of perspectives on autism, including psychiatric, biological, and philosophical, to consider different ways of thinking about autism, as well as its meanings to those who experience it, those who diagnose it, and those who research it.  Hens delves into the history of autism and its roots in the work of Leo Kanner and Hans Asperger to inform a contemporary ethical analysis of the models we use to understand autism today. She explores the various impacts of a diagnosis on autistic people and their families, the relevance of disability studies, the need to include autistic people fully in discussions about (and research on) autism, and the significance of epigenetics to future work on autism.

Hens weaves together a variety of perspectives that guide the reader in their own ethical reflections about autism. Rich, accessible, and multi-layered, this is essential reading for philosophers, educational scientists, and psychologists who are interested in philosophical-ethical questions related to autism, but it also has much to offer to teachers, allied health professionals, and autistic people themselves.



Towards an Ethic of Autism: A Philosophical Exploration
Kristien Hens | July 2021
206pp. |  6.14" x 9.21" (234 x 156 mm)
ISBN Paperback: 9781800642300
ISBN Hardback: 9781800642317
ISBN Digital (PDF): 9781800642324
ISBN Digital ebook (epub): 9781800642331
ISBN Digital ebook (mobi): 9781800642348
ISBN Digital (XML): 9781800642355
DOI: 10.11647/OBP.0261
Categories: BIC: MJN (Neurology and clinical neurophysiology), MJNA (Autism and Asperger’s Syndrome), HPQ (Ethics and moral Philosophy), PSAD (Bio-ethics); BISAC: PHI005000 (Philosophy / Ethics & Moral Philosophy), PHI031000 (Philosophy / Movements / General), EDU040000 (Education / Philosophy, Theory & Social Aspects), PSY022020 (PSYCHOLOGY / Psychopathology / Autism Spectrum Disorders). OCLC Number: 1260292451.


Contents

Acknowledgements

Prologue: Dynamics and Ethics of Autism Download
Kristien Hens

PART I: DIMENSIONS OF AUTISM

1. The Origins of Autism Download
Kristien Hens

2. The Nature of Psychiatric Diagnoses Download
Kristien Hens

3. Cognitive Explanations of Autism: Beyond Theory of Mind Download
Kristien Hens

4. Sociological and Historical Explanations of Autism Download
Kristien Hens

PART II: EXPERIENCES OF AUTISM

5. Difference and Disability Download
Kristien Hens

6. Epistemic Injustice and Language Download
Kristien Hens

7. Experiences of Autism Download
Kristien Hens and Raymond Langenberg

8. Interlude: Autism and Time Download
Kristien Hens

PART III: DYNAMICS OF AUTISM

9. Labels and Looping Effects Download
Kristien Hens

10. Dynamic Approaches Download
Kristien Hens

11. Autism and Genetics Download
Kristien Hens

Epilogue: Towards an Ethics of Autism Download
Kristien Hens

Bibliography

Index

Prologue: Dynamics and Ethics of Autism 
Kristien Hens

This chapter introduces the major themes of the book. The first theme is that of the many meanings of autism. The second theme is the importance of experience in knowing a phenomenon such as autism. The third theme is looking dynamically at biology.

PART I: DIMENSIONS OF AUTISM

1. The Origins of Autism 
Kristien Hens

This chapter describes how at least three meanings of autism have been around from the start.  I take a closer look at original texts about autism: the English text from 1943 by Leo Kanner (1894-1981), 'Autistic Disturbances of Affective Contact' and the German book from 1944 by Hans Asperger (1906–1980), 'Die "Autistischen Psychopathen" im Kindesalter'. As child psychiatrist, Leo Kanner viewed autism primarily as a disorder of development. For Hans Asperger, autistic characteristics were lifelong characteristics of one's personality. Hence, from the beginning, autism was conceptualized as a (child) psychiatric disorder, as an innate and lifelong character trait, and as a developmental phenomenon.

2. The Nature of Psychiatric Diagnoses 
Kristien Hens

This chapter explores a first meaning of autism, that it is a psychiatric disorder defined in a diagnostic manual. We investigate what a psychiatric disorder is. I give an overview of philosophical discussions about the distinction between mind and brain, psychology and biology. I explain how biological explanations for mental disorders have the advantage that they can take away feelings of guilt and open up routes towards healing. At the same time I argue, using Karl Jasper’s distinction between understanding and explanation, that reductionist approaches that merely give a causal biological explanation of mental disorders neglect the importance of understanding the meaning and context in which phenomena occur.

3. Cognitive Explanations of Autism: Beyond Theory of Mind 
Kristien Hens

This chapters explores explanatory models of autism and their ethical implications. I describe older explanatory models such as deficit in theory of mind, weak central coherence and problems with executive functioning. Focussing on deficit in theory of mind I demonstrate that problematic assumptions about autistic people and their capacity for emotions and empathy have profound implications for how people look at autistic persons. I also discuss how such assumptions have played a role in meta ethical discussions on the nature of morality. I describe more recent models such as models based on atypical information and sensory processing. Such models are sometimes thought of as more representative of the autistic experience.

4. Sociological and Historical Explanations of Autism 
Kristien Hens

Autism may have had different meanings throughout history and in different cultures This chapter explores how autism as a phenomenon in the clinic arose over the last century. Although the kinds of people we now call autistic may have always existed, they are given this specific diagnosis only recently. Sociologists and historians have provided several explanations. The rise of the diagnosis of autism may be due to the fact that in the mid twentieth century, children became more and more objects of study for psychology. Also, fewer children were institutionalized, and more parents cared for their children at home. The autism diagnosis offered them therapies.  Moreover, autism is a heterogeneous condition also in its biology. It may be impossible to find one specific biological cause.  This has caused some scholars to argue we should abandon the label altogether.

PART II: EXPERIENCES OF AUTISM

5. Difference and Disability 
Kristien Hens

This chapters introduces the neurodiversity approach and describes different models and approaches of disability, such as the medical model, the social model and crip theory. It argues that we cannot subdivide autistic people based on criteria of functioning alone to draw ethical conclusions. Instead, philosophers and ethicists must re-examen their intuitions regarding concepts of autonomy and what it means to lead a good life. We may define autism, in all its forms, perhaps in analogy with Elizabeth Barnes’ minority body, as a minority brain. In this way, we do not have to deny that some autistic people suffer from some aspects related to autism. Nevertheless, we also acknowledge that this does not necessarily have to be so. Simultaneously, a poststructuralist approach such as ‘Reading Rosie’ demonstrates that people with specific disabilities can always ‘be read’ in different ways, in various stories that can be juxtaposed but do not have to annihilate one another. In short, we can learn from disability studies that we must take first-person perspectives seriously and shy away from quick assumptions about well-being and happiness based on broad categories such as intelligence or autism.

6. Epistemic Injustice and Language 
Kristien Hens

This chapter explores why it had taken a long time before people considered testimonials of autistic people as valuable input of information. I analyse this as an example of epistemic injustice. I also elaborate on what this means to incorporate experiences of those who cannot express themselves very well in words, such as autistic people who do not use verbal language or people with an intellectual disability. I argue that this does not mean that these testimonials should be valued less, but that it is the moral duty of researchers, clinicians and ethicists to actively search for ways to take seriously testimonials that are a bit harder to understand or collect.

7. Experiences of Autism 
Kristien Hens and Raymond Langenberg

This chapter describes qualitative research of myself and others of the experiences of autistic persons. Such research demonstrates that autism is not solely a fixed identity that is persistent throughout one’s life. The diagnosis is a description of one’s functioning and can form the basis of how others understand you. As such, it is often a welcome explanation of the challenges people experience. But the meaning of autism and of the diagnosis of autism changes. There is the possibility for learning and misunderstanding in the interaction with others and the question of what it means to be autistic itself.

8. Interlude: Autism and Time 
Kristien Hens

This chapter offers some speculative reflections on autism and time. I describe autistic experiences of time in literature and in empirical research. Such experiences may be different from neurotypical experiences of time. However, this does not mean that autistic people are permanently out of sync with neurotypical people and vice versa. Respecting each other’s vulnerability is a question of adapting the own behaviour to accommodate the other and recognizing a joint base from which the other can be understood to help the other tackle challenges in such a way that they feel comfortable.

PART III: DYNAMICS OF AUTISM

9. Labels and Looping Effects 
Kristien Hens

This chapter engages with the work of Erving Goffman, Ian Hacking, Gil Eyal and Dan Navon to describe the impact of classifications on people and the impact of people on classifications. Goffman described the phenomenon of stigma: how a label becomes part of how you and others understand yourself. Ian Hacking has investigated how classifications alter those classified and how those classified alter the classifications themselves, a phenomenon he calls the looping effect. Gil Eyal and Dan Navon have applied this idea to the association between genetic syndromes and autism. Although the relation between genes and autism seems straightforward – genes ‘explain’ autism – their paper demonstrates that other mechanisms contribute to classifications and objects of study.

10. Dynamic Approaches 
Kristien Hens

This chapter explores dynamic approaches to autism. It engages with the ideas of George Canguilhem to describe a dynamic and context-sensitive approach to pathology. Something becomes pathological in relation to an environment in which it cannot maintain itself. This leads to the experience of suffering. Hanne Dejaegher explores an enactive approach to the mind in general, and autism in particular: sense-making happens in coordination with others and should not be considered individualistically. For new materialist thinker Karen Barad, matter itself becomes dynamic, and the distinction of language versus essence or word versus thing stops making sense. Our words, our praxis matter, even literally. This has profound ethical consequences.

11. Autism and Genetics 
Kristien Hens

This chapter describes how autism is often called an innate, genetic and lifelong developmental disorder. Indeed, since the beginning of the history of autism as we know it, people have considered it a biological disorder. As a result, for the last forty years most autism research was on its causes, and autism still is primarily conceived of as a phenomenon rooted in genetics. The chapter explore the link between autism and genetics and the meaning of genetics. I argue that genes convey a certain image of stasis. I describe epigenetic mechanisms and the concept of epigenesis and challenge the idea that biology and genetics are necessarily fixed and argue that the gap between our biology or genetics and our experiences is not that wide. In this way, we may be able to look at autism as a truly developmental phenomenon.

Epilogue: Towards an Ethics of Autism 
Kristien Hens

This chapter first gives an overview of the arguments developed in the different chapters of the book. Then it describes, using early detection of autism as an example, how dynamic approaches to autism can help providing a framework to think about specific clinical-ethical dilemmas.