Experiences of Adults Following an Autism Diagnosis PDF
Preview Experiences of Adults Following an Autism Diagnosis
Experiences of Adults Following an Autism Diagnosis Kristien Hens Raymond Langenberg Experiences of Adults Following an Autism Diagnosis Kristien Hens • Raymond Langenberg Experiences of Adults Following an Autism Diagnosis Kristien Hens Raymond Langenberg Department of Philosophy Diversity - Campus Gelbergen University of Antwerp Hoeleden, Belgium Antwerp, Belgium ISBN 978-3-319-97972-4 ISBN 978-3-319-97973-1 (eBook) https://doi.org/10.1007/978-3-319-97973-1 Library of Congress Control Number: 2018951792 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2018 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the pub- lisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institu- tional affiliations. Cover Pattern © Melisa Hasan This Palgrave Pivot imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland A cknowledgements The publication of this book would not have been possible without the support and feedback of many. First and foremost, we would like to thank our conversation partners for their openness and their willingness to par- ticipate in the interviews. Both the people of Campus Gelbergen and the people of Autism Ethics Network have provided valuable feedback on pre- sentations we did of the work in progress. In thankful memory of Leo Beyers, Raymond Langenberg would like to emphasise the importance of the Communication Analysis conversations, which have been of great importance to him in exploring his qualities on a social and interpersonal level. Special thanks to Suzan Langenberg for her stimulating role to study communication and search for means of expression and phrasings to enable the communication of the unsayable. We would also like to thank the anonymous reviewers, both in Dutch and in English, for their con- structive remarks. We thank Fleur Beyers for her excellent editing job, Chelsea Oostdijk for her fantastic job on the English translation and Robert Borremans, who—together with Kristien Hens—was responsible for transcribing the interviews. v A d bout the rAwings When you are unable to directly express what is on your mind, it is diffi- cult to participate in events with other people. Not that you easily become aware of this, because there are all sorts of patterns (escape routes) in com- munication to let that pass unnoticed. There are patterns of agreements where you do something for someone else. This is already a dangerous area, however, because when this becomes too intellectual, things can go wrong. Collecting things for someone else, or fetching something, or offering something, is relatively safe. The reci- procity of these kinds of patterns is also surmountable. But when you make an agreement about a text or about a document that must be written or an inventory that must be drawn up, it is imperative that you clearly understand exactly what it is you have agreed upon. Most of the time, hav- ing exactly the same understanding of an agreement can be a source of misunderstandings. On top of that, a certain imbalance may arise in the immediate contact because it is often the other who says what he wants, chooses or thinks. In the Communication Analysis conversations with Leo Beyers—which we had on a weekly basis for a period of 20 years—he suggested I make a drawing about how I thought it is to communicate with me and how I thought it was going. So this was said and done. With this, a broader world came within reach. It became possible for me to no longer merely react, and no longer hide and get trapped in guesses about what I thought the other expected from me. I could learn vii viii ABOUT THE DRAWINGS to speak about what I had mapped out and think about why I drew it like that, the way I depicted it. It became possible to speak about that which I had not yet developed an awareness of, or whereof I was not capable in the previous period. Because I kept throwing something in between that always, in one way or another, had something to do with trying to meet expectations. Initially, my drawings were very rudimentary patterns, lines and smileys I used to outline the course of a conversation. Later on, I also added pos- sible thoughts, ideas and responses to the drawings. Similar to the example of ‘the helping thoughts’ of BartDelam,1 I also assessed the possible responses to an event. I discovered that a line on a piece of paper can also express something, and slowly but steadily I started to work more with impressions. There was a period that the drawings I had made in my most difficult moments of despair, self-criticism, insecurity and not knowing evoked the most recog- nition and left the biggest impression on others. The drawings from this publication came into being while working on the interviews with the people who participated in this book. Profoundly struck by the seriousness and depth of the conversations, I was only able to express the effect this had on me by drawing it. I have been able to do the textual processing of the interviews and our research mostly in dialogue with Kristien Hens, but also with others who have conversed with me about this study. Raymond Langenberg 1 See Chap. 5 (Autism as a Way to Hold Your Own) and Appendix (The Helping Thoughts of BartDelam). c ontents 1 I ntroduction 1 2 Being ‘Different’ 21 3 Perspectives on Suffering 43 4 The Experience of Being Tested 61 5 Autism as a Way to Hold Your Own 79 6 The (In)ability to Self-Reflect 95 7 To Challenge or to Accept 105 8 Perspectives on the Future 117 9 Afterthoughts 129 Appendix: The Helping Thoughts of BartDelam 137 ix x CONTENTS Glossary 143 Bibliography 147 Index 153 l t ist of Ables Table 1.1 Overview of participants 13 Table 1.2 Interview schedule 15 xi
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