Towards an Ethics of Autism

Kristien Hens

Description

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.

Sujets

• Movements
• Philosophy
• Psychopathology
• Autism
• Hans Asperger
• Leo Kanner

Informations

• Publié par: Open Book Publishers
• Date de parution: 07 juillet 2021
• Nombre de lectures: 0
• EAN13: 9781800642331
• Langue: English
• Poids de l'ouvrage: 2 Mo

Extrait

TOWARDS AN ETHICS OF AUTISM

Towards an Ethics of Autism
A Philosophical Exploration
Kristien Hens





https://www.openbookpublishers.com
© 2021 Kr istien Hens




This work is licensed under a Creative Commons Attribution 4.0 International license (CC BY 4.0). This license allows you to share, copy, distribute and transmit the text; to adapt the text and to make commercial use of the text providing attribution is made to the authors (but not in any way that suggests that they endorse you or your use of the work). Attribution should include the following information:
Kristien Hens, Towards an Ethics of Autism: A Philosophical Exploration . Cambridge, UK: Open Book Publishers, 2021, https://doi.org/10.11647/OBP.0261
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ISBN Paperback: 9781800642300
ISBN Hardback: 9781800642317
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ISBN Digital ebook (epub): 9781800642331
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DOI: 10.11647/OBP.0261
Cover image: Photo by Mika Baumeister on Unsplash at https://unsplash.com/photos/40HCUdMcHiw
Cover design by Anna Gatti.

Contents
Acknowledgements
vii
Prologue: Dynamics and Ethics of Autism
ix
PART I: DIMENSIONS OF AUTISM
1
1.
The Origins of Autism
3
2.
The Nature of Psychiatric Diagnoses
13
3.
Cognitive Explanations of Autism: Beyond Theory of Mind
33
4.
Sociological and Historical Explanations of Autism
51
PART II: EXPERIENCES OF AUTISM
63
5.
Difference and Disability
65
6.
Epistemic Injustice and Language
81
7.
Experiences of Autism
93
(written with Raymond Langenberg)
8.
Interlude: Autism and Time
105
PART III: DYNAMICS OF AUTISM
115
9.
Labels and Looping Effects
117
10.
Dynamic Approaches
129
11.
Autism and Genetics
141
Epilogue: Towards an Ethics of Autism
157
Bibliography
165
Index
179

Acknowledgements
This book is the result of ten years of philosophical and ethical explorations of autism. During that period, I spoke to many people, colleagues, students, autism professionals, parents of autistic children, and, last but not least, autistic people themselves. Not only did these conversations help me to think about autism with more nuance, but they also helped me think about philosophy and ethics in a more grounded way. Much of what I now believe to be true, both in ontology and ethics, is the result of my grappling with the many meanings of autism and appreciating the importance of the autistic experience. So my gratitude goes out to all the people I met on the way.
I want to thank the people from Open Book Publishers for their professional handling of this book: Alessandra Tosi, Lucy Barnes, Anna Gatti, Laura Rodriguez. I would also like to thank the anonymous reviewers who read the book’s first version: your comments were spot on, and I enjoyed rewriting the book with your suggestions.
I would also like to thank the people from LAuRes (Leuven Autism Research) for welcoming me into their group and giving me a taste of the many aspects of clinical and fundamental research into autism. Thanks also to people from Autism Ethics for exciting workshops and philosophical discussions.
Raymond Langenberg, Susan Langenberg and Fleur Beyers from Campus Gelbergen offered great inspiration and help in writing the Dutch book, of which this book is a rewritten translation.
A special thanks to my colleagues Katrien Schaubroeck, Ilse Noens, Daniela Cutas, Anna Smajdor, Jean Steyaert, and Andreas De Block. You are colleagues in the truest sense of the word!
The ideas in this book formed the gist of my project proposal, which has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 804881). This grant allowed me to create my team, NeuroEpigenEthics . I could not have developed many of the ideas in this book without the input of all its former and current team members. Eman Ahmed, Jo Bervoets, Delphine Jacobs, Laura Mattys, Lisanne Meinen, Emma Moormann, Gert-Jan Vanaken, Leni Van Goidsenhoven: you are all stars. Thank you for a fantastic experience!
David, Roman, Aaron & Isaak: I spend too much time writing behind my computer, I know. You are what matters.

Prologue: Dynamics and Ethics of Autism

© 2021 Kristien Hens, CC BY 4.0 https://doi.org/10.11647/OBP.0261.13
This is a book about the meanings, experiences and dynamics of autism.
My initial interest in autism began ten years ago. As a bioethicist who had written a PhD on pediatric biobanks, I was interested in the ethics of genetic research and genetic diagnostics of autism. These practices raise several questions in traditional biomedical ethics, such as what genetic findings should genetic counsellors convey to their clients, and are genetic ‘risk’ factors 1 for autism a good reason to opt for reproductive techniques such as in vitro embryo testing? Moreover, back in those days, and still today, public discourse on autism often centred around whether or not there are too many diagnoses of autism. Children with an autism diagnosis, previously scarce, were now to be found in every classroom. Some commentators have argued that this reflects the way that we pathologise and medicalise atypical behaviour. At the same time, parents of autistic children have often criticised this view, as they consider it a denial of the genuine challenges they and their child face. I soon realised that it is impossible to answer these ethical questions without reflecting carefully on the concept of autism itself. It seemed self-evident that when investigating questions about autism, we should first identify precisely what we mean by it. If we suggest that there are now too many diagnoses, this might imply that we think that some of the children currently diagnosed do not actually have autism, and that diagnostic practices should be more stringent. If we argue that autism is something that people can choose to prevent through reproductive techniques, we need to set the record straight on what is being prevented.
When we ask ourselves what it would look like to do good in relation to any subject, and more specifically, what good clinical practice is, we first need a notion of what we are talking about. When thinking about autism and psychiatric diagnosis in general, this is a complex task. The ontological status of psychiatric diagnosis is the subject of fierce debate, and autism in particular is much discussed. However, this is not primarily a book about the history of autism. Scholars have written many books on this topic, 2 and those looking for an overview of autism and its history can consult the resources listed in the footnotes.
In this book, I shall draw up an approach to conceptualizing autism that I think has ontological and ethical benefits, without attempting to close down the discussion about the essence of autism. I will use the term autism rather than the official and widely used Autism Spectrum Disorder ( ASD), as the latter only covers some of the many meanings of autism. The reader should also be aware that I write this book from a Belgian perspective. In Belgium, diagnosis is still an essential first step in searching for answers and solutions related to autism, both in children and adults. Clinicians here do not often prescribe extensive behavioural therapies such as Applied Behavioural Analysis ( ABA), which are contested by many autistic people and which raise ethical questions of their own. I will therefore only dwell on them sporadically. In Belgium, a diagnosis is generally followed by support and services in school or the workplace and psychoeducation about autism. In this book I use the terms ‘autistics’ and ‘autistic persons’, rather than ‘persons with autism’, as the former is preferred by autistic people, at least in English-speaking countries. 3
Autism professionals often talk about autism as something that is heterogenous, a spectrum. This suggests that autism can manifest itself in many different ways. For example, some autistic people have cognitive disabilities, and others have cognitive strengths. Some autistic people do not use verbal language, whereas others are comfortable with oral communication. Still, ‘heterogeneity’ or ‘spectrum’ suggests that autism itself is one thing. Over the years, I have acknowledged that autism is a multi-