University of Groningen Autism's anatomy Verhoeff, Berend IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below. Document Version Publisher's PDF, also known as Version of record Publication date: 2015 Link to publication in University of Groningen/UMCG research database Citation for published version (APA): Verhoeff, B. (2015). Autism's anatomy: A dissection of the structure and development of a psychiatric concept. University of Groningen. Copyright Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons). Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum. Download date: 25-09-2021 Autism’s Anatomy A dissection of the structure and development of a psychiatric concept Berend Verhoeff ISBN: 978-90-367-8160-2 © 2015 by Berend Verhoeff Printed and bound by Ipskamp drukkers, Amsterdam 2015 Cover art: M.C Escher (1898-1972), Bird Fish Symmetry Drawing E22, 1938 © 2015 The M.C. Escher Company – Baarn – The Netherlands www.mcescher.com All rights reserved Cover design: Paul Gangloff Publication of this dissertation was supported by the University of Groningen Autism's Anatomy A dissection of the structure and development of a psychiatric concept Proefschrift ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen op gezag van de rector magnificus prof. dr. E. Sterken en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op donderdag 5 november 2015 om 12.45 uur door Berend Verhoeff geboren op 29 augustus 1977 te Amsterdam Promotores Prof. dr. D. Draaisma Prof. dr. G.C.G. Dehue Beoordelingscommissie Prof. dr. P. de Jonge Prof. dr. M.H.N. Schermer Prof. dr. N. Rose Voor Paulien, Elin en Leonard. Contents Acknowledgements ix 1 │ Introduction: A focus on autism 1 2 │ What is this thing called autism? 17 Supplement: Challenging a mechanistic model of mental disorders 53 3 │ Autism in flux 65 4 │ Stabilizing autism 93 5 │ Two kinds of autism 137 6 │ Fundamental challenges for autism research 167 7 │ Kurt Goldstein on autism 177 8 │ Conclusion: Searching for autism in a sea of flux 205 Summary 221 Samenvatting 227 Acknowledgements First of all, I would like to thank my primary supervisor professor Douwe Draaisma. After an informal chat in a café in Groningen, he offered me a small position at the Theory and History of Psychology Department at the University of Groningen. This position gave me the opportunity to combine working as a psychiatrist with doing the type of historical and conceptual research I aspired to do, within a stimulating and unique multidisciplinary department. From the very start, professor Draaisma has been a steady support in my struggle to make sense of the history and science of autism. I have been exceptionally fortunate to be supervised not only by him, but also by another prominent Dutch academic and celebrated author of important books on the interwovenness of psychiatry and society, professor Trudy Dehue. Her work provided me with numerous significant and original perspectives on contemporary psychiatry. As a Dutch psychiatrist I am very happy to notice that her contextualizing and historicizing approach to mental ailments is no longer feared and resisted by many of those in the field, but is increasingly appreciated and internalized by Dutch psychiatry. Both my supervisors have been invaluable sources of inspiration and motivation for developing my own thoughts on the science and practice of psychiatry. They underpinned and sustained my commitment to understanding mental health problems as problems of entire human beings in complex worlds and not merely as problems of human bodies and brains. Many others have made a contribution to this dissertation. Various anonymous article reviewers are gratefully acknowledged for sharpening my analysis with their remarks and thoughtful suggestions. I am also very grateful to Des Fitzgerald and the following participants of the Theory and History of x │ Acknowledgements Psychology Forum meetings at the University of Groningen for taking a lot of time and effort to improve my preliminary manuscripts: Carlos Baum, Jonna Brenninkmeijer, Jessica Cadwallader, Maarten Derksen, Robin Rymarczuk, Felix Schirmann, Stephan Schleim, Hilde Tjeerdema, Martijn Wit, and of course, Trudy Dehue and Douwe Draaisma. I would also like to thank Dominic Murphy for welcoming me as a research visitor at the History and Philosophy of Science Unit at the University of Sydney. Despite all the attractions of living in the beautiful city of Sydney, I was able to make valuable progress on my dissertation during my months at the University of Sydney. Cycling to the beautiful campus at 7:00 AM for a focused day of writing, and joining my family in the afternoon for a swim, some desperate attempts to surf, and a barbecue at Bronte Beach was an awesome experience I will never forget. The Philosophy Department at the University of Amsterdam is also thankfully acknowledged for accepting me as a visitor and for providing me with a perfect place to work close to my house. The fellow PhD candidates at the UvA, Martin Boeckhout, Guus Dix, Pim Klaassen, Floortje Moes, Lukas Verburgt, Sara Vermeulen and Willemine Willems, are all thanked for the discussions and many lunches we had. In particular, I would like to thank Pim Klaassen. As the teacher who introduced me to the work of Ludwik Fleck and Nikolas Rose during my Master’s in Philosophy; as the colleague who introduced me to the Philosophy of Science Unit at the UvA; and now as a good friend and neighbor at ‘Camping Geversduin,’ Pim has been of immeasurable value. It is not putting it too strongly to say that, in many ways, this dissertation would not have been possible without Pim’s enthusiasm, generosity and intellectual input. I also owe much to Maria Kamphuis for correcting my persistent grammatical errors and badly written sentences. Writing in English remains a struggle for me. Furthermore, I want to thank my wonderful parents Pom and Guus, who have been extremely supportive in multiple ways. Throughout the years, they have always encouraged me to do the things I considered important and they have always showed confidence in the decisions I have made. And, of course, the many days they have babysat my children have been (and still are) priceless. Further, for many unexpected hours of babysitting – before unavoidable deadlines and lectures – I am also indebted to my mother-in-law Marieke, my Acknowledgements │ xi sister Emma, my brothers Otto and Stijn, and my (future?) brothers and sisters- in-law Peter Paul, Luc, Kristina, Nathalie and Annet. Finally, there is, of course, my very dear and wonderful wife Paulien. Even at times when I was hardly able to explain what it was that I was analyzing, not to mention the practical implications of it, she had faith in the project’s significance and positive outcome. Throughout the years, Paulien has always been there for me and I also thank her for our children, Elin and Leonard, the most beautiful little creatures one could desire. These little ones helped – and more often forced – me to take some distance from my work. Above all, they made me realize that compared to all the amazing things a child is able to do in the first five years of her life, this five-year project is a rather dull achievement. Autism’s Anatomy 1 │ Introduction A focus on autism Autism makes an appealing case as a way to explore the structure and development of psychiatric knowledge. When I started my psychiatry residency training program, more than a decade ago, the phenomenon of autism had not yet been fully settled in the minds of mental health professionals, especially not in adult mental health. I remember visiting a middle aged man who had been a patient in an ambulatory psychiatric service for people with enduring psychiatric problems. He received psychiatric support from a multidisciplinary team for many years and he had seen many psychiatrists and medical doctors who had formally diagnosed him with a DSM-IV anxiety disorder not otherwise specified (NOS). When I visited him at the request of his psychiatric nurse and case manager, I saw an anxious and lonely man in an extremely dusty apartment. He never cleaned, never cooked, only left his house for vital necessities, collected war documentaries, hardly talked, and, apart from the mental health professionals, he only had social contact with his sister. When I visited him, he suffered from panic attacks since his landlord had threatened to remove him from his apartment due to nuisance and contamination.1 At that time, my colleagues and I saw a suffering man in desperate need of care and support, but we did not see a man suffering from autism. We still had to learn to perceive autism. Certainly, he was not the typical Rain Man, but with autism- specific diagnostic questions, a developmental biography, and an autism-trained 1 This case has been slightly modified to prevent any type of recognition of the particular patient. 2 │ Chapter 1 psychiatric gaze, the chances are high that he would now be diagnosed with an autism spectrum disorder. Today, autism is harder to miss.