Experiences of Adults Following an Autism Diagnosis

159 Pages·2018·1.81 MB·English

by  Kristien Hens

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
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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