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)

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 Acknowledgements

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
 About the Drawings

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).
 Contents

1 Introduction   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
 List of Tables

Table 1.1 Overview of participants 13

Table 1.2 Interview schedule 15

xi
 CHAPTER 1

Introduction

Abstract The authors are Kristien Hens (University Professor in Ethics)

and Raymond Langenberg (Management Consultant). The latter is writ-
ing from his own experience of receiving and coming to terms with a
diagnosis of Asperger’s syndrome. In this introduction, they start by
exploring different meanings of autism, after which they provide an out-
line of the methodology they used for this project.

Keywords Autism • Dimensions • Definition • Phenomenology •

Experience

What does it mean to feel different? How does it feel to be diagnosed with
autism as an adult? Although there are libraries filled with books that
explain autism based on biological or cognitive models, these two ques-
tions have not yet been thoroughly investigated. Moreover, for a long
time, autism was considered to be a children’s disorder, neglecting the
perspective of adults with the diagnosis.
The idea to further research this perspective was born in August 2015
when two researchers met at the 29th European Conference on Philosophy of
Medicine and Health Care in Ghent, Belgium: Kristien Hens, lecturer at
the University of Antwerp, who had at that time just finished a short proj-
ect on genetics and autism, and Raymond Langenberg, co-initiator of the
independent think tank Campus Gelbergen, who, inspired by his own
diagnosis of Asperger’s, was working on his own research project.

© The Author(s) 2018 1

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_1
2 K. HENS AND R. LANGENBERG

Kristien Hens’ project was based on bio-ethical questions such as

“should all children with a diagnosis of autism be genetically tested?”,
“what is the purpose of fundamental research on the genetics of autism?”
and “is it justified that genetic knowledge about autism is being used for
reproductive goals such as embryo selection or prenatal diagnosis?” At an
early stage of her research, it already became clear that these questions
were fundamentally insoluble, at least, when using prevailing and conven-
tional theories on autism. After all, the answer to these questions depends
on the perspective on autism: is it a disease? A behaviour? Or could it in
certain cases perhaps just be a different way of thinking, a way that could
possibly also have its benefits? Up until now, the available academic litera-
ture predominantly regards autism from a medical perspective: autism is a
disorder that should be explained and possibly also cured or prevented.
Few studies have tried to understand what having a diagnosis of autism
actually means.
Raymond Langenberg is partner in Belgian training and consultancy
company Diversity, as well as a researcher with Campus Gelbergen, an
independent think tank and research institute that organises lectures and
debates between practitioners and theorists and publishes books on busi-
ness, philosophy and societal issues (Cahiers Campus Gelbergen). The peo-
ple behind Campus Gelbergen have extensive experience with
Communication Analysis. Communication Analysis is a research practice
where the analyst, confronted with a co-researcher, tries to analyse his or
her share in the interaction with the other. Actor, director and later phi-
losopher Leo Beyers developed this practice analysis in the mid-1980s1
from a dramaturgical perspective. Precisely from the awareness that every
expert has an object relation to that which he wants to study, Beyers states
that this represents just one kind of knowing: the knowing about and
thinking about. Communication Analysis, however, studies the practice of
knowing that originates from the subject itself (the analyst), in counter-­
conduct2 with the other, the other subject (the associate). The critical
counter-conduct herein is aimed at “(...) understanding myself (...) under-
standing, changing myself gradually during the conversation, the experi-
ence, through and with the other recognising him as an other that
changes me.”3 This can also be applied to the context of autism. Analysing

1
Beyers (2014, pp. 7–12).
2
See Michel Foucault’s concept counter-conduct, resistance against ruling discourse.
3
Idem. p. 18.
 INTRODUCTION 3

how autistic people handle social situations may be more productive than
holding on to a diagnosis that says that social situations can cause prob-
lems and people to withdraw. In Beyers’ Communication Analysis, it is
precisely these situations that are examined and engaged with in order to
determine and register what someone—for instance with a diagnosis of
autism—perceives or observes. This takes experience, orientation, thought,
logic and behaviours into account that were developed by this someone in
order to survive (coping behaviour). Current criticism of all these aspects
also opens up a space of discovery and selection where meaning can be
created and exchanged and lifted to a social level of interaction. This usu-
ally leads to a deeper contact and a more profound conversation for both
of the conversation partners. The interviews that are the common thread
within this study, represent these reflections that transcend the simple ‘tak-
ing someone into account’.
From his practice as an andragogue (social sciences), Raymond
Langenberg is working on a longitudinal study of the meaning of diagnos-
tics. In this study, he explores how self-reflection, that moves beyond a
certain dysfunctioning, can be made possible, as it is a necessity in order to
find your bearings in life, work and thought. Langenberg was diagnosed
with Asperger’s himself 14 years before the beginning of the project and
is also from this perspective interested in the question of the meaning of
diagnostics.
Before giving an outline of our study, we would like to propose a few
layers of meaning of the concept of autism. We understand that to some
readers, this may seem a complex theoretical treatise or a repetition of
what is already known about autism. We have nevertheless decided to
include this in this book because it could serve as an important frame of
reference for people who are less informed about the subject. Apart from
this specific framework, the reader will notice that this book leaves the
perspective of writing about the phenomenon and continues to write from
the experience and perception of the interviewees.
Autism is first and foremost a concept from clinical practice. When
people have autism, or are diagnosed with autism, it means that they meet
certain behavioural criteria. This means that the diagnosis is based on an
observation of behaviour and that this behaviour must have such an effect
on the diagnosed person that he or she dysfunctions considerably. Which
diagnostic manual is used for the diagnosis depends on where you are
diagnosed, and whether—in that place and time—a newer version of test-
ing instruments has already been accepted as a formal diagnostic device.
4 K. HENS AND R. LANGENBERG

In this context, it is important to note that throughout the years, autism

has gained a broader meaning in diagnostics. In the mid-1900s, Leo
Kanner already wrote about 11 children who supposedly had an affective
disorder, an autistic aloneness.4 With the various revisions of the Diagnostic
and Statistical Manual of Mental Disorders (DSM), the definition of
autism developed into a spectrum of behaviours, in the fifth edition charac-
terised by problems with communication and social kills on the one hand,
and repetitive behaviours on the other hand.5 At the time the interviews
for this book were being held (2016), social security in the Netherlands
still used DSM-IV as a guideline, whereas in Belgium, DSM-5 was already
applicable.6 The most important difference between DSM-IV and DSM-5
with respect to autism is that the most recent version (a) speaks of a dyad
of persistent deficits in social communication and social interaction and
(b) speaks of restrictive and repetitive patterns of behaviour, interests, or
activities.7 In DSM-IV, this was still regarded as a triad, and communica-
tion and social interaction were regarded separately. Another revision in
DSM-5 is the addition of the former diagnoses of the syndrome of
Asperger and Pervasive Developmental Disorder—Not Otherwise Specified
(PDD-NOS) to ‘Autism Spectrum Disorder’. Furthermore, a multidi-
mensional approach of the diagnosis was tried: various people with a diag-
nosis of autism can exhibit more or less of a certain trait. Nevertheless, the
diagnosis is still categorical: you either have autism or you do not. You
cannot just be a little autistic. The aspect of dysfunctioning—which is con-
ditional to the diagnosis—is also important. After all, the extent to which
someone dysfunctions can depend on a few intrinsic traits of the individ-
ual. For instance: your IQ can offer protection, but it can also exaggerate
certain symptoms, and the extent to which you suffer from sensory over-
stimulation can depend on how your brain is put together and so on.
However, it also depends very much on the context. If the DSM-5 criteria
are followed strictly, someone who meets these criteria will be able to live
with them and accept their existence in their daily life, but he or she will
not necessarily qualify for the actual diagnosis of autism. Or—in the con-
text of academic research—a population could be screened for autistic

Kanner (1968).
4

See DSM-5. p. 50.

5

6
From January 1, 2017, The Netherlands also uses the DSM-5 as a guideline for
diagnostics.
7
DSM-5. pp. 50–59.
 INTRODUCTION 5

features, but this does not necessarily mean that someone who is tested
positively for these features would necessarily receive a diagnosis. Autism,
or autism spectrum disorder, is by many clinicians still considered a clinical
disorder after all, based on an estimate of what is best for a person with a
certain request for help.
For many people however—researchers, clinicians and autistic people
themselves—autism refers to a specific neurological and biological reality.
The term ‘neurodiversity’, for instance, which is often used by advocates
for the rights of autistic people, explicitly refers to a neurological differ-
ence. This is why autism, as a characteristic of someone’s biology, should
be conceived of as a difference and an identity—like homosexuality—
rather than as a disease that we must cure. Society should invest in support
and acceptance, rather than in the quest for a medicine or therapy for the
‘redemption’ of autism.8 Interestingly so, the arguments based on a belief
in the biological foundations of autism are also being used by researchers
who plead for further research on genetics and neurology of autism, since
the findings of such a study would help to develop a biologically founded
therapy.9
The idea that autism is a condition that is caused by a specific genetic
makeup has gained in popularity the past decades. This is certainly partly
due to the fact that, under the influence of psychoanalyst Bruno
Bettelheim,10 for a long time people thought that autism was caused by
distant behaviour of the mother during the first years of the child’s life.11
The theory was that, as a response to—and a defence against—this paren-
tal rejection, the child withdrew in itself. Ideas such as these cause huge
feelings of guilt in—particularly—these mothers. The search for a biologi-
cal cause of autism, such as a genetic cause, can also be regarded in this
light: for parents—and mostly mothers—who were accused of contribut-
ing to the autism of their children, the notion that autism could be a
genetic condition—which cannot be prevented—came as a relief.
Traditionally, a difference is made between syndromal and idiopathic
autism. In the first case, autism is an expression of an underlying (genetic)
syndrome, such as Fragile-X. In this case, the biological cause is known. In
the second case, the biological cause of autism is not (yet) known, but it is

8
Jaarsma and Welin (2012).
9
Hens, Peeters and Dierickx (2016).
10
Bettelheim (1972).
11
Nadesan (2005).
6 K. HENS AND R. LANGENBERG

generally presumed that there is one. As our knowledge about genetics

and neurology is increasing, it is possible that the difference between these
two is becoming less relevant. We still have to wait to see whether a defi-
nite genetic cause can be found in all cases of autism. There is an increas-
ing amount of proof that genetic variations associated with autism are
common variants, which means that they can also be found in the neuro-
typical population (i.e. people without an autism diagnosis).12 Moreover,
there is growing evidence that autism could be caused by an interaction
between genetic and environmental factors. It has been known for a long
time that autism is more frequent in children who are born prematurely.
The ingestion of fine particles during pregnancy or the father’s age at the
time of conception also seems to have an effect. In her book Rethinking
Autism, Lynn Waterhouse comes with an abundance of results from
genetic studies and brain research, after which she concludes that it is
probably not a good strategy to consider autism as a disorder that origi-
nates from a certain biological reality. It is after all very unlikely that such
a reality is found: it is better to consider autism to be two behavioural
symptoms, which can be the result of a big variety of genetic or neurologi-
cal conditions, just as fever is a symptom of an underlying condition.13
However, the fact that autism is related to one or more neurological or
cognitive realities which are different from typical neurological or cogni-
tive functioning cannot be denied. Still, it is currently unclear whether a
uniform neurological/cognitive explanation can be found at all for this
different functioning. Perhaps there really are various (or innumerable)
autisms. There are, for instance, various cognitive–psychological theories
that try to explain autistic behaviour. The most renowned is the one that
claims that autistic people supposedly have a deficient Theory of Mind
(ToM). In philosophy and psychology, ToM refers to the ability to explain
and predict the behaviour of others by attributing it to mental states such
as beliefs, desires, intentions and emotions. Autistic people, for instance,
are considered to find it difficult to imagine that others have intentions,
too. As a consequence, they are also considered to have little insight into
their own experiences.14 It should be noted here, however, that a lack of
ToM can also be related to other conditions and that autistic people do—
albeit in some cases a bit later—develop a ToM. Whether a lack of ToM in

12
Hens, Peeters and Dierickx (2016).
13
Waterhouse (2013, pp. 432–436).
14
Frith and Happé (1999), Baron-Cohen, Leslie and Frith (1985).
 INTRODUCTION 7

others automatically implies a lack of Theory of Own Mind—the aware-

ness of an own self—is also still not clarified.
Other theories state that the primary deficit with autism is related to a
weak central coherence.15 Autistic people for instance supposedly get lost in
details and have problems to connect the different details in order to cre-
ate a unity. A variation on this hypothesis is that autistic people supposedly
have a version of context blindness.16 This would mean that they have more
problems extracting extra information from the context. According to a
third theory, autistic people supposedly have weak executive functions. As
a consequence, autistic people supposedly have problems planning and
organising things, and find it difficult to simultaneously coordinate differ-
ent activities. This makes it difficult to take the next step, for instance in an
argumentation, which could partly be the reason why they often have
trouble with change.
Several more recent theories localise autism in differences on a basic
level, for instance sensory perception or motor skills. An example hereof is
the Intense World Theory, which localises the origin of autistic behaviour in
neurobiology: local neural microcircuits supposedly hyperfunction, which
makes people unable to sensibly process sensory input.17 This theory is
popular with many autists, because it fits very well with what they experi-
ence themselves. In the DSM-5, differences in sensory perception have for
the first time been included as one of the possible manifestations of ‘restric-
tive and repetitive behaviours’. In her book Autism: A Social and Medical
History, Mitzi Waltz has the following to say about this:

In the DSM-5, for the first time sensory-perceptual issues will appear as
something that may affect people with autism and might be considered
when making a diagnosis, though not yet as a diagnostic criterion. It is
remarkable that it has taken so long for the internal experience of autism,
rather than aspects of autism that may puzzle or bother non-autistic people,
to become part of how it is officially defined.18

A more recent theory, High, Inflexible Precision of Prediction Errors in

Autism (HIPPEA), has been developed by Sander van de Cruys and col-
leagues. He argues that autism might have to do with a lacking predictive

15
Frith (2003).
16
Vermeulen (2009).
17
Markram, Rinaldi, Markram (2007).
18
Waltz (2013, p. vi).
8 K. HENS AND R. LANGENBERG

coding. Autistic people supposedly have problems with—based on the

context—predicting the uncertainty of incoming information. Because of
this, they would sometimes draw the wrong conclusions from information
that is very context-sensitive. With respect to information where the con-
text has a negative influence on accurate perception, such as optical illu-
sion, they make less mistakes. They regard everything as ‘new’ information,
and therefore prefer circumstances that are predictable.19
Still, many questions remain open. Is weak central coherence for
instance the cause of all the other problems, such as executive functions?
Are all these deficits the consequence of other, underlying causes at the
level of information processing? Or are there various kinds of autism,
which may appear to be similar behaviourally, but in fact one theory is
based on overzealous neurons and the other on a deficit in ToM? In The
Philosophy of Autism, Nick Pentzell, who has a diagnosis of autism himself,
describes how “sensory overload inhibits anyone from thinking about
much more than surviving its barrage.”20That children with autism often
score less on tests that are focused on assessing the understanding of inten-
tions or thoughts of others, could be because of the fact that during the
test, they already suffer from the amount of stimuli to such an extent that
they can no longer sensibly participate in the test. Or that these children,
because they suffer from sensory overstimulation at a very young age,
develop a ToM considerably later than neurotypical children. The opinion
people have about what autism really ‘is’ also has consequences for the
question how one should ethically deal with autistic people. If the theories
that take a different way of sensory processing—or information process-
ing—as a starting point are correct, should therapy then not first and fore-
most be focused on relieving the pressure this involves, and not on
teaching or training a ToM? And if it is true that behind the symptom
autism, several possible explanations and several primordial deficits can be
found, we think it would be extremely important to start looking even
more individually at which approach is of importance to which
individual.
We think there are at least three layers of meaning that concern the
concept of autism and that—contrary to the biology of autism—are not
yet examined extensively enough. The first layer is the popular meaning of
autism. Although autism professionals emphasise that every individual

19
Van de Cruys et al. (2014).
20
Pentzell (2013).
 INTRODUCTION 9

with a diagnosis is different, autism as a concept does have certain con-

notations that are difficult to ignore. In the book Representing Autism.
Culture, Narrative, Fascination, Stuart Murray describes how autism is
depicted in books, films and other art forms: as neurological difference or
uniqueness, and as a disease that should be overcome.21 The way in which
autism is depicted has several important implications. Erving Goffman and
others have demonstrated that when you are told that you have a certain
characteristic or identity X, this influences your self-image.22 Philosopher
of science Ian Hacking calls this the looping effect: classification changes
that which or whom is being classified and vice versa.23 People can identify
with categories, but also reject and transform them.
Apart from the popular meaning of autism, it can also be seen as a cul-
tural phenomenon, which we will call the second layer. Again, we could
look at this from several perspectives. It could be possible that the fact that
we consider autism in itself to be a singular phenomenon is exactly the
result of the fact that we only have one name for the different underlying
disorders or differences. Moreover, what autism means and whether it
means something depends on the time and place. The historical evolution
of the concept has already been described by several authors, including the
Dutch psychiatrist Berend Verhoeff. He describes how, throughout his-
tory, the term ‘autism’ has referred to different things.24 Verhoeff argues
that the children whom Leo Kanner described mid-twentieth century,
possibly did not have the same disorders as the people we now call autistic.
He argues that the idea that the diagnostic criteria have broadened is not
entirely true: the meaning of autism has shifted a few times throughout
the history of autism, which resulted in the fact that it is not clear at all
what—throughout history—exactly is referred to when people speak
about autism. This is why, says Verhoeff, we should not assume that we
can find one and the same biological reality under the concept of ‘autism’.
Gil Eyal and his colleagues of Columbia University in New York argue in
their book The Autism Matrix that the current increase in diagnoses of
autism is due to diagnostic substitution of ‘mental retardation’ by ‘autism
spectrum disorder’, and also due to the fact that children with mental
disorders were—in the mid-1900s—deinstitutionalized. Since this meant

21
Murray (2008).
22
Goffman (1963).
23
Hacking (1996).
24
Verhoeff (2013a, b, 2015).
10 K. HENS AND R. LANGENBERG

that the child was cared for at home, it was up to the parents to start look-
ing for adequate help. What also contributed to the increase in diagnoses
of autism was that a range of services and therapies that were not available
for (‘plain’) intellectual disability, were available for the support of autism.
A final, but certainly not unimportant contributor to this trend has to do
with imaging. Intellectual disability used to have the connotation of being
something insurmountable.25 It is important to keep in mind that autism
can at the same time—throughout various cultures—refer to different
things, and that a certain neurological characteristic which we would call
autistic in one culture, would possibly not stand out at all—or does not
even have to be designated—in another culture. After all, the extent to
which we consider something to be a disorder is closely connected to what
we consider to be normal behaviour.26 On the one hand there are, for
instance, cultures where it is not expected at all—or where it is even con-
sidered to be inappropriate—that children make contact with adults or
when they spontaneously mingle in conversations of adults. On the other
hand, our western culture, with its abundance of stimuli and penchant for
quick chats, may consider or perceive certain neurological differences as
pathological sooner than in a different era or environment.
The third layer of meaning is about what it means for the diagnosed
person to have a diagnosis of autism. Because, even though more attention
has been given recently to values and opinions of people with a diagnosis
of autism—for instance, when dealing with the goals of scientific research—
27
considerably less research has been done on what such a diagnosis means
for the individual itself. Although, in recent years such research has taken
a giant step forward.28 For example, autistic scholars have been publishing
books about their own experiences and that of other autistic adults,29 and
the book Aquamarine Blue 5 describes the educational e­xperience of
autists in college and at university.30 Moreover, there is a growing number
of initiatives in different countries that ensure the participation of autists
in research priority settings, such as the PARC initiative in the UK

25
Eyal (2010, p. 33).
26
Kim (2012).
27
Fletcher-Watson et al. (2017), Nicolaidis et al. (2015), Yusuf and Elsabbagh (2015),
Pellicano, Dinsmore and Charman (2014), Pellicano and Stears (2011).
28
Huws and Jones (2008).
29
Milton (2017), Beardon (2017).
30
Prince-Hughes (2002).
 INTRODUCTION 11

(Participatory Autism Research Collective) and LAVA, an initiative in

Belgium by autistic people that provides input and advice to Belgian
researchers.
Relatively little research has been done querying autistic people in
Flanders and the Netherlands about their experience with autism and with
the diagnosis. In this book, we started from the assumption that research
on the experiences and perceptions of people with a diagnosis of autism
can be valuable to come to a better understanding of how a diagnosis
works and what it means to feel different. We have interviewed 22 adults
who have been diagnosed with autism, autism spectrum disorder or
Asperger at some point in their lives.

Methodology
As a guideline for setting up the interviews, we have used a phenomeno-
logical method. We do think that the phenomenological dimension of
autism is essential in order to better understand the ethical and philo-
sophical implications of ‘having autism’, and that this is at least as impor-
tant as bio-causal explanatory models. As Wouter Kusters states in his
book De filosofie van de waanzin:

(…) when you start reducing something -– whether it is mind, love or mad-
ness, and whether the result is called matter, hormones or neurons – you will
always first have to know what it is you reduce.31

Given the several layers of meaning of the concept of autism, we believe

that a phenomenological approach is very appropriate to help us under-
stand, not so much what autism might be biologically, but rather what
autism means.
The use of a phenomenological interview method means that we set our
own presumptions about autism aside, and assume that the lived reality of
having a diagnosis of autism is an important source of information.32 In the
set-up of our interviews, and while discussing our results, we used the
method of the Interpretative Phenomenological Analysis (IPA), a qualita-
tive research method which is specifically appropriate to study experiences

31
Kusters (2014, p. 28).
32
Van Manen (1990, 2014).
12 K. HENS AND R. LANGENBERG

of respondents in the context of life events.33 IPA is characterised by a

double hermeneutics: the interpretation of the respondents’ own experi-
ences by the respondents themselves and our analysis of these experiences
and interpretations. IPA is also a method that focuses on the idiographic,
rather than trying to generalise experiences. This is why we always outline
the context of the respondents’ statements and then assess how these expe-
riences fit within that context. We do indeed assume that this reality is
understandable, and that the experiences our interviewees describe are not
entirely different from other human experiences and realities. We also
assume that our participants can recount their own experiences in a credi-
ble way, just as credible as if they were not in possession of a diagnosis. The
stance that self-reflections of autistic people are not credible because of
their deficient ToM is not something we endorse. We will further explore
this in Chap. 6: The (In)ability to Self-Reflect.
In the spring of 2016, we started to recruit respondents by publishing
an announcement of the study on the website of the Vlaamse Vereniging
Autisme (Flemish Autism Association, VVA) and on social media such as
Facebook and Twitter. Two participants are acquaintances of Raymond or
Kristien. The condition for participation was that people had to be at least
18 years old, and that they had to have a diagnosis of autism, autism spec-
trum disorder or syndrome of Asperger. An overview of the participants
can be found in Table 1.1. Because of methodological restrictions, we only
examined the experiences of individuals who were aware of their diagno-
sis. It should be noted that our study was conducted in 2016, which means
that all data in the schedule below—as well as any references made in the
interviews—refers to the situation in 2016.
One limitation of our study could be that we were not able to examine
the experiences of people who are not aware that they have a diagnosis of
autism. Because our research question also concerns the experience of
having a diagnosis, we are of the opinion that this limitation is not of sig-
nificant importance. On top of that, we are not looking to generalise con-
ceptions of autism, but rather to describe a wide variety of experiences. We
also purposely did not ask the participants to show us their diagnostic
report or tell us their IQ, since we did not want to let this influence our
perception or interpretation. Moreover, we wanted to let the participants
decide, on their own initiative, whether they thought it was important to
inform us about the contents of the report. Here, our study clearly differs

33
Smith (2009).
 INTRODUCTION 13

Table 1.1 Overview of participants

Chosen name Age Gender Interview type

Carl 55 M Oral
Bluetopian 47 M Chat
Baukis 60 F Oral
Sandra 38 F Oral
Robyn 30 F Oral
Sofie 53 F Oral
Marie 41 F Chat
Michael 26 M Oral
ASSpirina 53 F Chat
Albert 46 M Email
Hannah 36 F Oral
Samuel 43 M Chat
Tatiana 51 F Oral
Nora 28 F Oral
Matteo 36 M Oral
Bas 35 M Oral
Els 47 F Oral
Vic 39 M Oral
BartDelam 46 M Oral
Kris 46 M Oral
Mickey 27 M Oral

a
This respondent chose the name “ASSpirientje”, which refers to (1) the Dutch word for Aspirin (aspirine)
and (2) the Dutch abbreviation for ASD (ASS, Autisme Spectrum Stoornis). For the purposes of the
English translation, we therefore chose the name “ASSpirin”

from the more traditional autism studies, where people do wish to make a
distinction based on IQ or other measured characteristics.
Another limitation to our study could be that people who applied may
have a tendency to experience their diagnosis as positive. It is possible that
those who resist their diagnosis, or those who did not choose to turn to
psychiatric diagnostics themselves, are less tempted to participate in such
a study. And indeed, the majority of our interviewees appeared to have a
very positive attitude towards the fact that they were diagnosed. It would
therefore be good to repeat this study with participants who, for instance,
have always known that they have a diagnosis of autism. Also, the major-
ity of people we interviewed had only recently received their diagnosis.
This may affect how they experience their diagnosis, but it also gave us
the opportunity to explore the experiences of people who were still
actively in the process of coming to terms with the diagnosis. It would be
14 K. HENS AND R. LANGENBERG

very interesting to do further research on experiences of being diagnosed

over an extended period of time: immediately after the diagnosis, five
years after, ten years after… and then compare those experiences and see
how perspectives may or may not shift.
Given the fact that some people with a diagnosis of autism are not quite
comfortable with an oral interview, we offered the applicants the choice
between an oral interview, a chat session or an email conversation. They
were also free to choose the location where the interview took place. Some
people told us that they wanted to see the interview guide beforehand,
which we allowed. After each conversation, we told the participants that
they—should they wish to add things to their story—were always free to
contact us via email or other media. One participant afterwards decided to
withdraw from the project.
The questions we used during the interview can be found in Table 1.2.
We chose to not immediately start with the subject of diagnostics and
autism, but to first allow the people to tell us something about themselves:
what they enjoy, what their anxieties are… With many participants, the
subject autism was addressed spontaneously although they were aware
that autism was a major topic of the project in general. We did not strictly
follow the order of the questions as shown in Table 1.2. We also used an
open-ended interview style wherein we tried to focus intently on certain
aspects that were important to the participants.
The oral interviews were transcribed afterwards. Since the participants
spoke or wrote about their personal experiences, the transcripts or chat
sessions may contain sensitive information. Prior to the interview, we pro-
vided the participants with an information sheet which explained that the
interview material would be coded, and that in the final publication, we
would use a name they could choose themselves, for instance a pseud-
onym. Participants have signed an informed letter of consent. The conver-
sation material is secured with a password. The study protocol, the
information sheet and the letter of consent have been approved by the
Ethische Adviescommissie Sociale en Humane Wetenschappen (Ethical
Advisory Committee Social Sciences and Humanities) of the University of
Antwerp.
All interviews took place between June 2016 and August 2016, and
were immediately transcribed (Kristien Hens 12 and Raymond Langenberg
10 interviews). The analysis was performed inductively: we did not use a
theoretical framework when we first looked at the data. We individually
 INTRODUCTION 15

Table 1.2 Interview schedule

Who are you?

Please tell us something about yourself. How would you describe yourself?
Which things do you like? What did you used to like (as a child, as a young adult)
What activities do you enjoy? (Why do you enjoy this? What do you experience when
doing this? How would you interpret this yourself? What do you think about that? What
do these enjoyable moments mean to you?)
What do you worry about? Why do you think you worry about exactly that?
What are things that really bother you? If so, can you please tell us what they are?
Can you explain to us what it means to you when you are really bothered by
something?
Please give an example of a situation that is typical to who you are. (Typical to what you
experience, what you think, what you see, what you notice, how you react).
Please tell us about a difficult situation you were involved in.
   Who were involved in it?
   What role did you have?
   How did you deal with it?
   What solutions did you find, or—when they did not come from you—what were the
solutions?
Which people are important to you? (Now, in the future, in the past). Can you explain
what it means to you that something is ‘important’? With whom do you enjoy getting in
contact?
Being different
Do you have the feeling that you are different than others?
What does being different than others mean to you?
What is deviant to you?
Wherein do you consider yourself to be the same as others?
Is it important to be the same? Can you demonstrate this with an example or
anecdote?
Do you sometimes have the idea that others exhibit deviant behaviour?
How did you discover that?
Did it come from you or from others?
Wherein lies that being different? How you deal with the ‘other’? How you see or
interpret things? How you hear and feel? Is there an event that comes to mind that can
help you explain this?
When did you first discover that you regard, experience and perceive things differently
than others?
Which experiences have caused you to discover that there were differences between you
and the others?
How did you deal with these experiences? Can you also give examples of that?
Which events have led to your diagnosis?
What does it mean to you to experience that difference?

(continued)
16 K. HENS AND R. LANGENBERG

Table 1.2 (continued)

Diagnosis
How did you come to the conclusion to start a diagnosis procedure?
What did you think about the diagnostic process?
Did you have doubts?
Who questioned you?
How were you questioned?
How was that for you?
Which tests did you do, what did you think about the tests?
What do you now, afterwards, think about the whole process?
   Did it help you?
   Does it make you think differently about yourself?
   Did it teach you new things about yourself which you did not know before?
What did that diagnosis mean to you when it was just made? What does the diagnosis
mean now?
How do you involve the diagnosis in thinking about yourself?
Closing Question
Is there something you wish to add? Is there a question you would like to ask yourself?

wrote down themes in the margins of the printed transcripts. In the period
from September 2016 to December 2016, we had biweekly meetings
where we discussed our notes, analysed the documented experiences and
merged the themes we had a consensus over into larger categories. In that
stage, relevant quotations were already selected. These categories are rep-
resented in the chapter headings of this book, which were organically
ranked in a logical thematic structure afterwards. Based on the interviews,
we discovered a kind of logic, a common thread running through all the
stories of the interviewees. In the different stories, similar courses become
visible, displayed in consecutive chapters. After a first draft of the texts, we
asked the participants to give feedback on the interpretation of the respec-
tive quotes. All participants have provided suggestions to improve the
quotes and our interpretation of them. We have incorporated all these
suggestions, except for one respondent, who withdrew from the project
afterwards.
The following chapters successively describe experiences of being dif-
ferent; experiences of suffering that have motivated people to seek help;
experiences with the tests as such; the interpretation people have given to
their diagnosis as being an explanation for their uniqueness on the one
hand, but on the other hand also as a challenge of having to relate to the
stereotypes that are connected to the concept of autism, and with which
 INTRODUCTION 17

they may not identify. The book ends with an elaboration on how the
participants come to self-reflection, which means of expression they use
for that and also how our participants think about care. Each chapter is
preceded by a drawing by Raymond Langenberg. Indeed, as the autistic
experience often implies having different preferences for communication,
besides purely oral communication, we believe that these drawings, which
reflect Raymond’s own reaction to the interview, should be considered as
an equally important source of information as the written text.

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 CHAPTER 2

Being ‘Different’

Abstract This chapter explores the experiences of our interviewees with

respect to their own being ‘different’. How did they notice they were not
the same as others? How do they think they deviate from the norm? And
what do they think and how do they feel about that? This chapter provides
us with numerous stories from people who have had first-hand experience
of not fitting in that share the strange situations they found themselves in.

Keywords Autism • Difference • Experience • Challenges

© The Author(s) 2018 21

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_2
22 K. HENS AND R. LANGENBERG

Many of the stories our respondents tell display a similar historical pattern.
A great number of them explain that they felt different than the other
children when they were young, and this initial experience has for many of
them been the motivation for deeper research into their own ‘being differ-
ent’. In books and academic articles, people often speak of the enigma
called autism, that is, the renowned work of autism researcher Uta Frith,
Autism. Explaining the Enigma.1 Frith claims that our autistic fellow
1
Frith (2003).
 BEING ‘DIFFERENT’ 23

human beings are qualitatively different from the average person, both
socially and with respect to certain interests. Using this kind of symbolism,
the person with a diagnosis is portrayed as difficult to read, as a puzzle to
be solved.
Even though there is a lot of thorough knowledge available about the
phenomenon of ‘being different’ with respect to autism, mostly from the
viewpoint of medical professionals or caregivers, we have chosen to let our
interviewees bare witness to how they experience their own ‘being differ-
ent’. Some of them have always had the feeling that they functioned dif-
ferently, that they notice different aspects of an event and that they are
sometimes more bothered by what happens than others. Other interview-
ees only sensed this being different when they reached adulthood. Many
of them, however, explain that they were able to understand experiences
or behaviours from the past better after the diagnosis.
Needless to say, we will face a few obstacles when we ask questions
regarding people’s being or feeling different. Every person is more or less
unique and different, so what are we talking about when we address the
theme of ‘being different’? Do we perhaps need the inevitable other to tell
us? When discussing topics of this nature, we easily enter an area of ambi-
guities, experiences and perceptions. This is, however, the area par excel-
lence where people with a diagnosis of autism seem to show a large number
of similarities. In this chapter, our participants start by describing what
‘feeling different’ means to them. After that, we will elaborate on specific
experiences of time, space and events, which all lead to the conclusion that
people with a diagnosis indeed respond, think and feel differently than
others.
The quotations below show that the interviewees make their own
report of their experiences and perceptions. They are, however, also faced
with the impossibility to determine what exactly is different about the
experience that others—who they perceive to be normal—have. A multi-
tude of coincidental events can cause someone to conclude that he or she
reacts differently or is less flexible. Carl (55), diagnosed with Asperger’s
syndrome at 42, explains:

So my internal ‘knowing’, shall I say, is like: I must do something with that, I

must make sure that I learn to think, I must make sure that I deal with that.
How do you call it, is that a conscience or something, or your self-reflection? But
on the other hand, to the outside world, I have an enormous need to conceal that
there is something wrong with me or that there is something different. You see?
So you actually try to remain as inconspicuous as possible, to avoid being faced
24 K. HENS AND R. LANGENBERG

with that being different by the outside world. And yes, being called to account
for this and yes, I don’t know if that’s different than others. But deep down, you
know: I’m going to have to do something about this someday. [Carl]

Respondents refer to a continuous stream of experiences in daily life

that illustrates their previously mentioned ‘responding differently’. Via
daily experiences—along with some extreme experiences—they start to
reflect on the difference between themselves and others around them.
Self-knowledge—which often first presents itself in early childhood—only
very gradually evolves into the awareness that this difference means being
truly different. Still, it is often not easy to phrase or completely know this
difference. It can consist of experiencing small daily misunderstandings:
becoming aware of the fact that you assess things differently than others,
noticing that you apparently see different things than many others, per-
ceiving that you have understood agreements differently than the other…
It is a succession of little mistakes as it were, which others seem to be able
to get over easily. The person who experiences those mistakes finds this
much more difficult however. And thus, a concern arises: if that one thing
is understood incorrectly, what about all the other moments of attun-
ement? Our respondents often mention how they have less tolerance for
sound, brightness or smell than others. These others sometimes appear to
be more flexible and less out of balance in the same and similar situations.
These kinds of experiences, and the observation that this is a daily reality,
can eventually lead to the conclusion that one may indeed be different
than everyone else.
Bluetopian (47), diagnosed with an autism spectrum disorder (ASD)
and non-verbal learning disorder (NLD) a few months before the inter-
view, compares it with a fast luxury car that looks like a BMW or a
Mercedes, but only has a two-stroke engine inside and is therefore unable
to perform as one would expect from a luxury car.

Yes. I have always thought, because I pay attention to details, that my work is
precise. But the tests demonstrate that this is not the case. Especially when the
pressure increases, I don’t work detailed and precise. What a shock! Apparently,
attention to detail has always been a coping strategy. Quite energy c­ onsuming…
but I can’t help it, because otherwise I’ll blunder time after time… You see…
again tempted to bring up the image of a Mercedes or BMW… while there is
only the capacity of a two-stroke engine… I still don’t have the concrete answer
to: “What now?”, and that is frustrating. It’s mainly exhausting. It would be
better if I let things go: handbrake off and we’ll see… [Bluetopian]
 BEING ‘DIFFERENT’ 25

If nothing comes naturally, like it seems to come to others, insecurity

and the fear that there is something wrong increase. For some respon-
dents, it has taken years until they even dared to acknowledge to them-
selves that sometimes, they have different experiences or that they respond
differently than others. It often takes time to be able to see that this being
different is not just an ordinary difference of who one is, or that one sim-
ply experiences things in one’s own way. The moment when it starts to
sink in that—apart from the explicable and natural difference there is
between all human beings—there is also something fundamentally differ-
ent, is also not the same for everyone. Most of our respondents were only
faced with this when a certain line was crossed, and it became too much
for them to handle.
Some of the participants describe the feeling of being different as a
general feeling of being ‘from another planet’, of not really belonging
here. Tatiana (51), diagnosed with the syndrome of Asperger a few months
before the interview, describes it as follows:

It’s not easy for me to go outside. I don’t experience this with all people, but I do
for instance when I walk the streets. I see people go to work, while I have always
felt a loner, even as if I’m from another planet. [Tatiana]

Further on in the conversation, Tatiana points out that she likes having
people around, but that the feeling of not fitting in causes her to prefer
being alone. Robyn refers to autistic people as ‘dogs in a world of cats’.
Another participant, Mickey, says he feels that he is playing a part in The
Truman Show. The Truman Show (1998) is a movie where the main char-
acter is unaware of the fact that his whole life is actually a world-famous
reality show and that he is the protagonist. At a certain moment, a couple
of anomalies and the help of a member of the public—who cannot bear to
watch it anymore—make Truman realise what is really going on. Both the
references to being ‘from another planet’ and The Truman Show are about
the feeling of being the odd one out. In both cases, people feel that they
have no access to certain information that is freely available to others. The
others, the normal people, do seem to fit in this world. This feeling is also
illustrated in the next quotation, where BartDelam (46)—diagnosed with
autism spectrum disorder for four years—describes his feeling that people
are laughing at him:

I take other people’s remarks, which are intended to be funny, way too seriously.
When someone makes a small mistake, people sometimes make well-intended
26 K. HENS AND R. LANGENBERG

jokes such as “Wake up, sleepyhead”, “You’re not the sharpest tool in the box, are
you?”, “Forgot your glasses?”… These kinds of remarks are having an increas-
ingly strong effect on me. I don’t really think they’re jokes and it seems I take
them literally. Instead of laughing heartily with my own mistakes, I go into
defence mode and try to explain what has gone wrong. Rationally, I know that
these remarks should not be taken seriously and that others don’t expect that I
start defending myself. Now I just laugh, along with the others, although actu-
ally I still don’t think it’s funny. When I see other people laughing and I don’t
know what they’re laughing about, I immediately think they’re laughing at me.
[BartDelam]

Some of the participants refer to periods before the diagnosis, and even
to their childhood, in order to illustrate that this feeling of being different
and not fitting in at all has always been there. Tatiana explains:

I was very lonely as a child. I really wanted to have friends to do things with
that I liked, but they always wanted to do different things. As a child, I would
do very strange things, just to fit in. I think I can really just remember that I
was always playing by myself in the sandbox, or that I would eat worms or some-
thing. [Tatiana]

As a result of not fitting in at all, Tatiana tried so hard that she started
to do extreme things in order to fit in. What took the form of eating
worms as a child to impress her peers, evolved into more extreme behav-
iour during her teens. Unfortunately, this behaviour did not have the
effect she hoped for.
Some of the participants never realised they functioned differently until
after the diagnostics. Robyn (30), diagnosed with autism a few months
before the interview, reveals how her psychologist asked her why she said
“sorry I’m too early” in a certain conversation:

And that was for me one of the first times I went like: “Ah, you guys really think
differently.” Because I am thinking: how can I keep a conversation going, how
does this person act and what should I say now, and am I saying it correctly.
While you guys think about how that person is feeling. And that is something I
don’t think about at all, no, that was something for me… that was very strange
to realise. [Robyn]

For Robyn, “sorry, I’m too early” just meant “hello”, while she thinks
that neurotypical people are more concerned about each other’s feelings.
 BEING ‘DIFFERENT’ 27

What actually is this being different? And in what respect is being dif-
ferent necessarily so bad? Bluetopian defines autism as a disorder, not nec-
essarily because it is ‘bad’, but because it means you don’t belong to the
regular order. That is why it is—not necessarily for himself, but because he
experiences that ‘others’ and society in general apparently expect this—
important to be the same as the great majority:

I don’t in any way agree that autism is a ‘quality’, a ‘blessing’… It is definitely

a disorder because it deviates from the ordinary. [Bluetopian]

The fact that being different (because of autism) is seen as a disorder

because it implies that you deviate from what people consider to be nor-
mal, seems at first tautological. Still, this quote is very clarifying. Not con-
forming results in the fact that the other can become a threat. Samuel (43)
describes it as follows:

Being different mostly means to me not understanding what others do, doing
something completely different, that others think what I do is strange, and vice
versa. It mostly means that others are threatening to me because they appear
fickle and unpredictable. [Samuel]

Because you are different than the other, and you don’t understand
him or her because of it, the other can come across as threatening. Samuel
also describes how ‘being deviant’ automatically implies that others want
to correct or repair you:

Being deviant means that you perceive and give meaning to things differently,
in the sense that it is a contribution to chaos and therefore must be removed.
Most people want to remove the deviant in one way or another, either by impos-
ing their own signification or by repairing it. [Samuel]

According to Samuel, being different means that you do not fit in the
frame of reference of the ordinary fellow human being, and this is
­automatically a situation that must be corrected. As a ‘different’ person,
you are a minority anyway and you miss out, as Bluetopian says:

Fundamentally, my biggest problem is: not being able to connect with others.
Not really being able to connect with others. If YOU keep having problems to
connect with OTHERS – where others are usually still able to find someone – you
28 K. HENS AND R. LANGENBERG

can hardly claim that the problem lies with all the others. YOU deviate. YOU
are simply part of a minority. See the figures for prevalence of ASD in the gen-
eral public. YOU deviate = I deviate. [Bluetopian]

According to Bluetopian, it is too often expected that the minority

should conform to the majority, and it is an illusion to think that this
majority will simply accept people being different. Sofie (52) has received
the diagnosis of autism spectrum disorder two weeks prior to the inter-
view. She describes how she experiences the feeling of being an outsider—
now confirmed by a diagnosis—as an obstacle. She refers to her difficult
childhood, which has always made her feel like an outsider.

As a child, I was never allowed to join youth clubs, I was only allowed to stay at
home, between four walls. So I have always lived next to society. But now I want
to live in society. I really pity myself when again I feel I’m on the outside. [Sofie]

Earlier on in the conversation, Sofie described that she often finds it

difficult to keep a conversation going, to chat along at parties. She says it
is important to be the same as everyone else in order to participate in soci-
ety. She also really wants that. Achieving this remains difficult however.
Marie (41) was diagnosed with autism spectrum disorder a couple of
months before the interview. Ever since she was a young child, Marie has
had the feeling of not belonging in what she describes as a “strange world”,
which she generally experiences as complex and confusing. During the
interview, she describes the trouble she has creating an overview from all the
bits and pieces of information she observes in a defragmented state. She has
often done her best to stand out as little as possible, to be quiet and remain
in the background. Her own awareness of being different makes Marie’s
appreciation for others who are not entirely part of the group even greater:

Outsiders! Those who aren’t – can’t or don’t want to be – part of a group, are
or were bullied, who were probably all by themselves in the playground at school:
I am drawn to them. Those who are ‘different’ than the masses, the outsiders,
they don’t fit in but don’t want to stand out by desperately trying not to fit in
either. [Marie]

Marie specifies it as follows:

Well, at school there were sometimes students who didn’t want to fit in and
dressed and behaved like punks or something, but with that behaviour, too, you
 BEING ‘DIFFERENT’ 29

could actually categorise them, and they were engaging with a majority, even if
it was perhaps a small majority. The people I am talking about, are the people
who didn’t fit in and were excluded because others didn’t consider them to be
mainstream (enough). [Marie]

You cannot always do something about being different. It is not merely

a matter of refusing to adapt. Some participants in our study expressed the
feeling that the others are the ones that actually refuse to adapt. Bas (35),
diagnosed a year before the interview, explains:

It is quite ironic, if people say: “autists stay within their cocoon”, when it is
actually the other way around. We have to transcend this cocoon every day, by
understanding others who happen to be a majority, while it hardly ever happens
the other way around. Who then, is staying in his cocoon? [Bas]

Bas and also some other respondents argue that life would be easier
if everyone was autistic. Bas says that a cure for autism is an interesting
thought-experiment, but that he actually does not want it. The outsider
must transcend himself continuously, by participating in a world where
the majority thinks differently, and the majority makes a lot less (to no)
effort to empathise with the lifeworld of he who deviates from the norm
in certain areas. In this context, Marie says: “Maybe we should put
those pins on the market: ‘I’m an autist, get used to it!’”, but later she
nuances:

My partner is also autistic and she is more bothered by loud music in a restau-
rant or supermarket than me. So I don’t think that the majority who likes that
music must do without it just because we can’t stand it. I’m more like: ok let me
get my earplugs. [Marie]

Matteo (36) received his diagnosis of autism nine years before the
interview. He never really thought he was different from others, but he
thinks this is maybe because he did not speak with others very often. He
never noticed that he spoke very slowly until he heard a recording of
­himself. According to Matteo, the others were the ones who thought he
was different. This caused some problems for him, for instance in job
interviews. He enthusiastically responded to a job opening his job coach
proposed to him, but he was not aware of how he came across. He only
realised that after receiving feedback.
30 K. HENS AND R. LANGENBERG

Yes that man from the recruitment agency had encouraged me, but that woman
had said: “He speaks so slowly”. And yes, that was apparently unpleasant for
that woman, or that didn’t come across well, but I wasn’t aware of that during
the conversation. [Matteo]

Autism is often described as processing information differently. In vari-

ous interviews, it became clear that people feel that their own thought
processes are too slow. BartDelam explains:

What’s typically me is that I’m actually never spontaneous and that I can’t
deal with unexpected issues. It’s as if all stimuli first must pass through my
brain and must be processed there. Everything has to be reasoned first. Because
of this, my reactions can be delayed for a few seconds to a couple of minutes, but
are almost never spontaneous and uncontrolled. I also very often worry about
the same thing for hours, months even. [BartDelam]

Still, this ‘slowness’ can also imply a certain ‘thoroughness’. Some of our
participants describe themselves as very eager to learn. They enjoy reading
books, they like to learn new things and they have an eye for beauty.
In the quotation below, Albert (46)—diagnosed at 45 years—describes
how he thinks things through much more thoroughly than others during
meetings:

Before I say something, for instance at a meeting, I really think about all pos-
sible approaches and answers. This goes very far, covering all possible details, to
the point of absurdity. After much deliberation, I come to an answer. I will only
raise this when I am a 100% certain. This is why often, I don’t have much to say.
This does however make me notice things that others didn’t think about.
[Albert]

This focus on thoroughness and details can cause people to get stuck.
People get entangled in details and lose their overview. Tatiana uses a
­well-­known metaphor of maps, with motorways and detours to describe
how her mind works:

They all think I am very focused on detail and precise. There is an image with
maps, roadmaps: most people are on the main roads and go from a to b via these
main roads. But with me, those little brain paths have not died, so I am on the
little country roads. I also remember them all, and then I’m not in fifth gear
but I only drive in first gear. Or I walk. I think that’s very typically me and
 BEING ‘DIFFERENT’ 31

I also think that’s a good way to explain it. And I feel everything and I see
everything and it’s very heavy, very intense. It takes very long to sink in, but
when it sinks in it’s much heavier. [Tatiana]

Tatiana only slowly becomes aware of certain experiences, but once she
feels them, they are intense. She gives the example of a telephone call she
received from Sardinia when she was in a restaurant. Her adult daughter
had been in a car accident. The person on the phone told Tatiana her
daughter survived, which Tatiana experienced as a relief, after which she
finished her meal. Only when she got home did she realise the severity of
the situation. She called back and felt heavy emotions.
ASSpirin (53) was diagnosed with autism in December 2015. The quo-
tation below is an excerpt of a chat session with us, in which she describes
herself as “four ears and half a mouth”. With this, she illustrates how she
prefers to absorb many things first, before speaking herself. This makes her
a person who listens well and feels intuitively what her conversation part-
ner actually wants to say:

ASSpirin: Four ears and half a mouth.

ASSpirin: That means that I see, feel and hear a lot which in individual
conversations makes me come across as someone who listens very
well.
KH: You have the idea that you hear everything much better or that
you hear much more, do I understand this correctly?
ASSpirin: Not just hear, but also the body language and what’s not being
said.

Sandra (38) who was 35 at the time of her diagnosis, also describes this
attentiveness towards others:

They also very often say for instance that autists have no empathy. But I think
that I have a lot more empathy than anyone, anyway than other people some-
times, just because I think that I am someone who observes everything. I observe
everything, I look at everything, I think… I talk smoothly but I think about it
and I know what I say. There is not a word of what I say that I don’t agree with.
But that is because I think a lot… It is not that I prepare every answer, it comes
from within. [Sandra]

Sandra does not acknowledge this ‘lack of empathy’ that is sometimes

associated with autism. She has empathy according to her own norms, and
32 K. HENS AND R. LANGENBERG

she senses a lot of things about people. Her problem is that she is not able
to pinpoint it all spontaneously. By observing and thinking, she tries to
assess if what she senses is correct in order to be able to respond
appropriately.
Robyn does identify with the image of the autist who is unable to
empathise with the other. She makes an explicit distinction between empa-
thy and sympathy:

I can have sympathy, but apparently no empathy. So I find it very hard to imag-
ine how something may feel for someone else. It’s even hard for me to realise it
for myself, what I feel and what it means. But I can’t do it with someone else.
So if I say something, I’m not going to think about how that person will feel if I
say that. I often come across super brutish, and then people get angry with me
and I don’t know why. [Robyn]

Attentiveness, a desire for quality, depth and a focus for details can also
make a person very tired. Marie, for instance, describes how she sometimes
focuses too much on details and fragments. This makes it very difficult for
her to obtain an overall picture, which makes the world confusing:

‘Being different’ also means to me that I have found ‘living’ always so intensely
difficult and complicated. The world is so confusing, it sometimes seems as if I
see everything fragmented and then rapidly have to make an overall picture out
of all those pieces and details, and this the whole day through. [Marie]

For Baukis (60), diagnosed with autism at 58, the essence of autism is
that information is processed in a different way. She gives an example from
personal experience:

For me, that is the essence of autism: that you need much more time and energy
to connect all loose particles of information and come to the right conclusion. I
will give an example: I had little chicks in the garden, white to yellowish-brown
in colour. There are also a lot of sparrows here who come for a little bite. One
day, I’m on my terrace and I see a little light-coloured bird sitting outside the
henhouse and I think: hey, a white sparrow? Later, I come to the conclusion that
I was wrong, a white sparrow, that’s not right. It was of course a little chick who
must’ve climbed through the fence. Someone else would’ve probably recognised a
chick much sooner. [Baukis]

The difference in how she processes information lies in the fact that
Baukis has trouble finding an overview in the details, connecting the loose
 BEING ‘DIFFERENT’ 33

particles to come to the right conclusion. Sofie describes how she some-
times concentrates so much on a particular issue that she misses other
meaningful events:

Well, I don’t know if I see more things than others but what I do know – because
me and my partner always laugh about it – … For instance, there was a new
TV in the living room, but I needed something from the cupboard, so then I
don’t notice the new TV. I go straight for my goal and I ignore that TV com-
pletely, I don’t see that. So do I see more? We also had to look at a photo of a
kitchen scene, I only noticed those kitchen cabinets. So do you see more? No, on
the contrary, I think you see much less. [Sofie]

The fact that people care much about essences, more than about trivi-
alities, also means that conventional or unimportant categories do not
matter. For Els (47), diagnosed with autism a year before the interview,
this also applies when she thinks about choosing a partner:

Indeed, when I look back and think about it, when I consider my circle of
friends for instance and think about whom I feel more attracted to and whom
I feel less attracted to, I absolutely don’t discriminate between male or female,
it is every time about what they say, what they do and who they are. [Els]

Caring about essences is sometimes interpreted by others as a lack of

imagination. In the quotation below, Vic (39)—diagnosed two times (in
2004 and in 2014)—refers to The Neverending Story, a film from the
’1980s where a ten-year-old boy falls into a fantasy world after reading a
book. One of the main characters is a large white dragon with a dog’s head:

The thing is, if your own imagination is richer than the one such as Neverending
Story makes, the story is very boring, right. I can’t surpass the fact that I’m sit-
ting in my comfy chair, watching that dragon or flying dog or whatever. I see
fabric, I can’t surpass that. [Vic]

Vic himself, however, does not interpret this as a lack of imagination

from his side, but he considers it to be a surplus of imagination: because of
his imagination, he looks straight through the illusion raised by the film-
makers. He also explains this based on the literary writers he prefers:

I’m not a big fan of Tolkien for instance, but that is because… I quite prefer the
concrete, in the way Coetzee can be concrete. He can for instance describe the
34 K. HENS AND R. LANGENBERG

bottom of a landscape and then I almost smell or taste the earth. Or in the case
of ‘Waiting for the Barbarians’, I get thirsty from the dry and dusty ground in
that book. Murakami is okay, certainly, but a book with nothing but surrealis-
tic Murakami situations, no thanks. That’s why I prefer Norwegian Wood
over iq84. And yes, I don’t see myself as a little kid totally losing myself in a
puppet show, shouting at little red riding hood that the wolf is hiding in a cor-
ner, and that she should be careful. I always looked behind that panel at the
puppeteer, to observe him. [Vic]

The fact that people with a diagnosis of autism often have a different
sensory perception has been known for a long time. Still, ‘sensory prob-
lems’ were not mentioned in the description of autism until the DSM-5.
In our interviews, it was striking how a more intense experience of sensory
perceptions, for instance hypersensitivity to noise, was really felt as dis-
turbing. Sofie explains:

Sofie: Yes I become difficult, yes (laughs), very difficult. I get annoyed, I also
always complain like, wow, those noisy people… Yeah…
KH: And can you say what it is about that noise that really bothers you?
Does it make it impossible for you to think about anything else,
does it make you tired?
Sofie: Uh, yeah, that dominates everything, and it comes in so heavily that I
become difficult because of it. And bustle, I can’t handle that
either.

Carl also describes how he—ever since he was a child—experienced

disturbing noise, and a lot of it. Since no one wanted to believe him, he
recorded this noise with a tape recorder when he was 14:

I also made a sound recording once, simply of the sounds during lunch. Yes, why
do you do something like that? You can interpret it all afterwards, the sound
was too much… But I also think, everyone has something he can be bothered
about, yes, well there happened to be a lot of noise at home (laughs). But you can
only know that when someone else also says like: “gee, there is a lot of noise here”,
you see? So for me that was normal. [Carl]

At the end of this quotation, Carl describes how impossible it is to

know if something is ‘objectively’ too much noise, without checking this
with others. How do you know if someone else also experiences a certain
sound as noise? Recording sound is an attempt to allow someone else to
 BEING ‘DIFFERENT’ 35

distinguish and determine this ‘too much’. Sandra also describes how she
can be overstimulated by visual impressions:

Being overstimulated, gee, that’s when I get too many impulses. For instance
when I go somewhere and there are too many people. I am oversensitive to
sounds, to impressions, to images, to everything. If I get overstimulated, it is as
if my brain can’t handle it anymore, can’t filter anymore. I can be very stressed
then, very flustered. This can also make me so tired. [Sandra]

Later on in the conversation, Sandra describes how she became physi-

cally unwell at an office party:

For instance, two years ago, I just started working again, and I had to go to a
New Year’s reception. There were about 400, 500 people. I said to my boss: “Do
I really have to go there, because I think it’s not good for me, I know it’s not good
for me”. He says: “Yes, you have to go, everyone is expected to be there”. Okay so
I go there, I go inside – it was in the factory in R, well, that is a very dark place.
I went inside, there was this horrible band playing, with trumpets and such,
and I think that is horrible. I see all those tables, I can still describe how that
was, what stood where, the tables that stood there, the colour of the curtains,
where the music was. And I see all those people and I hear everything, and all
at once it seemed, but that sounds so weird, that I wasn’t there anymore. I
started walking around like a headless chicken and then I also couldn’t talk. I
literally became sick, just sick while I wasn’t anxious or anything, right. But I
just got sick because of all those impressions. And then at a certain moment I
was just gone, I don’t really remember it myself. Then my manager came and
said: “Sandra are you all right?” I said: “No”. I was gone again. I can’t
remember much more, until the moment that another boss asked me: “Sandra
are you okay?” And I said: “No” and I started to cry and I must’ve gone like:
“stop, stop, it hurts so much”… That was really because of the impressions for
me, people thought that I panicked and that I cried because of the social aspect,
but that had nothing to do with it. At that moment, that was just as if my
ears – that’s how it felt – were being ripped apart from the inside out. In the end
I really didn’t know anymore. They asked like: “What are you going to do?”.
I’m like: “I don’t know”. And then I was gone and my boss came and he said:
“And now you’re going home.” [Sandra]

Sandra describes her experience as an obvious, physical malaise, leading

to physical nausea. She also uses the words ‘pain’ and ‘despair’. Interestingly,
this event dates back to when she had already been diagnosed with autism:
her colleagues, who were aware of this diagnosis, interpret her panic as a
36 K. HENS AND R. LANGENBERG

result of an impossibility to hold her own in a social setting. Sandra, how-

ever, emphasises that what happened is indeed physical pain related to
overstimulation.
In the next quotation, Bas describes how this sensory overstimulation
complicates performing in a noisy work environment:

It is also that space, right, where that eternal radio is playing, which is a reason
in itself why I can’t do nine out of ten jobs. And if you dare to say something
about that, you are public enemy number one. [Bas]

Here too, there is a mismatch between the majority—who is not both-

ered by it and therefore also not tempted to do something about it—and
the person who is unable to do his job because he is not allowed to turn
the radio off. A bit further on, Bas describes how this overstimulation also
complicates stepping out into the world:

It actually easily comes at you when you just leave the door at home, or even
before that, and you step into the normal world and you mingle with the people.
Even if you just go to the shop, there will also probably be a radio playing or
something like that, and devices that make an insane amount of noise even. You
can also ask questions about this regarding functionality. And then there is too
much light everywhere, unpleasant smells, etcetera. [Bas]

Not all participants are bothered by overstimulation to the same extent.

Some of them experience moments when this occurs, and moments when
this is no problem at all. Michael (26 at the time of the interview), diag-
nosed with autism and NLD since 2011, explains that it is not so bad for
him:

I can stand quite a lot of stimulation, so it’s not too bad. If it’s too much, it’s
just mainly when they’re ear stimuli. For instance, I can’t concentrate when
there is too much noise, but I can work in a little bit of noise. In that festivity
hall where I work now, there is a lot of noise. [Michael]

A recurring theme throughout the conversations is a strong feeling of

justice and an aversion to injustice. Albert writes:

I can’t stand people who lie or don’t tell the truth. I can’t stand injustice. If there
is something I really can’t stand, I get really angry and I feel frustrated. This
makes me physically uncomfortable and very tired. During those moments, I
prefer to crawl into my bed and sleep all day. I sometimes dare to do this. [Albert]
 BEING ‘DIFFERENT’ 37

When we ask Matteo about what he really cannot handle, he answers:

Certain kinds of peer pressure or something, that bothers me yes…. For instance
in my football team when we have to do an exercise at the end of the training,
I can actually handle that, but I can’t handle it that they invent exercises that
one or two people are the victims of.

The feeling of injustice can rise to such levels that it overwhelms the
person and hinders his or her performance. Els explains that the fact that
two of her colleagues had an affair was insurmountable for her:

I worked in a team with two colleagues. Those two had a secret relationship and
were cheating on their partners and children. That didn’t work for my autistic
brain. […] Now I realise that. This was terribly difficult for me. I had learned
in my life that it is better to keep quiet about these things, but then the people of
the secretariat would come to me and laugh about it and I would laugh along
with them. But it was more forced than genuine. And they went home in the
evening and laughed it off, but I didn’t, I was stuck with it. I had to work with
these people. They were together in one office the whole day, and if I had a ques-
tion I had to wait until she went home and he had an hour to spare for me. He
was also the manager of the team. But I just couldn’t handle it, there was fric-
tion everywhere. So I decided to leave. [Els]

In two interviews (Marie and Mickey), the theme ‘traffic’ is addressed,

and the annoyance when people do not follow traffic rules. Mickey
describes how he always follows the traffic rules:

I know not everyone is as fast or as skilled, but I never drive too fast. If it says
90, you have to drive 90, or I drive 70 or I drive 50 or even 30 where it’s
allowed, where it’s obliged. [Mickey]

BartDelam also says he always found it difficult when people did not
follow the rules. He describes how he can get very angry when someone
parks in front of a garage: before his diagnosis, this was incomprehensible
and insurmountable. In Chap. 5 (Autism as a Way to Hold Your Own), we
will come back to how the diagnosis has enabled him to get over this in
the end.
Deficits in social interaction is one of the criteria for the diagnosis of
autism, as defined in DSM-5. Our respondents indeed describe how they
sometimes have difficulties in social situations. They, however, often
38 K. HENS AND R. LANGENBERG

ascribe possible problems to the fact that they have problems with super-
ficiality, or with small talk. This can, for instance, lead to problems at work,
as Bas describes:

And then I want to talk about substance at work, and about procedures, and
actually about: how we can make everything as good and as agreeable as possi-
ble. But it seems my colleagues or bosses only want to chitchat about everything,
except about what it is actually about: that work. They care more about your
non-verbal appearance. [Bas]

The theme of having problems with small talk comes back in several
conversations. Albert describes it as follows:

I don’t intuitively sense people. What do they like to talk about? Are they open
to a conversation? Do they think I’m cool/interesting enough to talk to or are
they just polite? It is difficult for me to start a conversation and keep it going. I
think small talk is useless, insincere and superficial. I am for instance not inter-
ested in where someone went for their holiday. Do people think this is an interest-
ing thing to know about me? I think that other people can do this all
automatically, without asking themselves questions. [Albert]

Marie says:

The chitchat about the weather in the elevator, small talk etc. Is that really
necessary? Are people perhaps afraid of silences that every wordless moment has
to be filled with ‘verbal diarrhoea’, as I call it….?! [Marie]

She further explains how problems in communication are often due to

a combination of events:

I do think that it’s important to be the same to a certain extent – ‘to a certain
extent’, because after all, we are all unique. An example: when you are some-
where for the first time, and people ask: “Were you able to find it?”, I’m flab-
bergasted. I also used to struggle with the ‘it’ – by now I know that people are
talking about the location or the address – but would I have walked in if I
HADN’T been able to find it, huh?!! Confusing! People should know what such
a simple question triggers inside my brain: Find what? Did I have to find some-
thing?? Oh, he means if I was able to find this location! Well I’m here, aren’t I,
he can see that too, why does he ask? Am I late perhaps? Check watch. No, in
time… Oh shoot! I hope my watch isn’t wrong! Must look at it later. Is there a
clock somewhere? And so it goes, on and on… Just add a handshake (=tactile
 BEING ‘DIFFERENT’ 39

sense) with an unknown person, in a strange environment with loads of new

impressions (=hear, see, smell) and I practically fall over from exhaustion, even
before the conversation really starts. [Marie]

The substantive level of a conversation is important, but a number of

participants have learned through trial and error that the majority of the
people is not very interested in deep conversations, or that people say
things that have more to do with convention than substance. Bluetopian
says:

A lot of people – most of them – don’t want to hurt you and start to describe
things more carefully, formulate their answers more prudently. They say for
instance: “I’ll speak to you about it one of the following days”. But actually they
don’t want to talk about it ever again. To tone this down, it becomes: “I’ll speak
to you about it one of the following days.” If I say: “we’ll speak about it one of
the following days, I will (generally) do this. [Bluetopian]

The inability to engage in small talk is often combined with a penchant

for real conversations. Hannah (36) received her diagnosis when she was
34. She shares how she dreads spending the evening on the neighbours’
terrace, because there she will have to chitchat. She finds it horrendous.
She also thinks that people often think she is too serious. Still, she notices
that her ability to have deep conversations is appreciated by a number of
people:

Yeah, they’ll say like – there’s not many of them right, there are only a few who
I can really do that with – and they say: “Oh you speak so naturally about the
most difficult things and yes, we can talk to you about things we can never talk
about with other people”. That is the response I get, and yes that I talk about it
in a very normal way while other people are like, we’re not going to talk about
that subject. While I maybe sometimes ask for it a bit too much, but people don’t
mind then, because they say: “oh we can have a deep conversation with you the
whole evening, and it doesn’t stop and then it’s 2 AM all of a sudden and then
we actually wish it wasn’t over yet.” [Hannah]

Others also explain that they have some good friends with whom they
can have deep conversations. Marie says that she likes to have face-to-face
conversations. The feeling of being on the same wavelength makes her feel
less lonely. This is not really the case when she has to talk in group, and
throughout the interview she makes it clear that she actually thinks group
40 K. HENS AND R. LANGENBERG

conversations are horrible. The fact that she was encouraged to do this
during a long stay in the psychiatric hospital, and that they didn’t take her
aversion of this into account, still makes her angry:

I think a good conversation with a friend is always nice: face-to-face moments –

without a third or fourth person present, so purely one-on-one – and being able to
talk freely about stuff without feeling embarrassed or having to hold back. I hap-
pen to be so lucky that I have known my best friend for more than 30 years: we
have been through a lot together and feel more like sisters than friends. I especially
love the closeness, the connectedness, being on the same wavelength. I suspect this
is because of the fact that I have always had the feeling that I didn’t belong, so
when I have a real good conversation with a friend, I can really enjoy it. [Marie]

ASSpirin also describes how she hates small talk. She does sometimes
have deep conversations with other people. She gives the example of a
conversation with a lady whom she met through a ‘give away-site’ on the
internet. She describes the contact to be “to the point, deep, a reciprocity
and openness”.
Our respondents report on how they often felt different than others.
They have the feeling that they react differently than others, and perceive
differently, sometimes experience things sharper, and sometimes are more
absent. Other perceptions—for instance visual, auditive or tactile stimuli—
are the subject of Ashley E. Robertson and David R. Simmons’ study, a
focus group-study of six adults with a diagnosis of autism. The study
showed that an excess of stimuli can cause physical pain.2 The feeling of
‘being different’ has also been described in other studies, such as Jones,
Zahl and Huws’ First-hand Account of Emotional Experiences in Autism: a
Quantitative Analysis, where the authors analyse Internet reports of five
people who identified themselves as ‘highly functioning’.3 They were of
the opinion that these people exemplified a feeling of being different, of
not belonging to this planet. This leads to frustration and often also to
periods of depression and feelings of fear and discomfort. For our respon-
dents, feeling different leads to a search for and wanting to know who one
really is. People want an answer to the question “how will I ever be able to
hold my own”? Our study enables us to substantiate the opinion that
being different or feeling different has an impact on mental well-being. In
the next chapter, this will be further explored.
2
Robertson, David and Simmons (2015).
3
Jones, Zahl and Huws (2001).
 BEING ‘DIFFERENT’ 41

Bibliography
Frith, Uta. 2003. Autism: Explaining the Enigma. 2nd ed. Malden: Blackwell Pub.
Jones, R.S.P., A. Zahl, and J.C. Huws. 2001. First-Hand Accounts of Emotional
Experiences in Autism: A qualitative analysis. Disability & Society 16 (3):
393–401.
Robertson, A.E., R. David, and R. Simmons. 2015. The Sensory Experiences of
Adults with Autism Spectrum Disorder: A Qualitative Analysis. Perception 44
(5): 569–586.
 CHAPTER 3

Perspectives on Suffering

Abstract Many interviewees have always known that they were different
and have certainly had their share of misery due to misunderstandings and
not fitting in. Some already had their suspicions that they might have
autism; for others, the diagnosis came as a surprise. The respondents
explain how living in modern-day society is hard for them and sometimes
very demanding. They tell us how functioning in this set reality exhausts
them, how demanding the pressure from society is and how lonely they
sometimes feel. An important element of this chapter is that it illustrates
our interviewees’ desire for human contact and communication.

Keywords Autism • Challenges • Suffering • Diagnosis • Adulthood

© The Author(s) 2018 43

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_3
44 K. HENS AND R. LANGENBERG

Being different can cause confrontations, feelings of isolation and diffi-

culty understanding the people around you. Some interviewees were for-
tunate enough to have people in their immediate surroundings that took
up a type of protective role, which provided just enough compensation to
enable them to function in society. Others followed a developmental path
which enabled them to avoid certain confrontations. And then others
describe how they sometimes have an extreme reaction to events which
most people find bearable. Still, all the respondents recall moments in
their lives when it became too much, when things turned out badly for
them.
Although for some respondents the diagnosis of autism was unex-
pected, it seems as if overall, there was simply no way around evolving
towards a diagnosis. When confronted with their immediate surround-
ings, they were continuously reminded of how different they were from
others. Justified doubt about the reasonability of their own experiences,
ways of thinking and reactions is a constant factor, and in some cases
develops into a fear of simply existing. Almost all interviewees decided to
undergo a diagnostic session after a very difficult period in their lives,
because they experienced external pressure to such an extent that they
 PERSPECTIVES ON SUFFERING 45

were no longer able to continue in the same way. In this chapter, we will
focus on the parts of the interviews that describe these difficulties.
It seems as if the feeling of ‘being different’ as described in the previous
chapter leads to problems at a certain point. However, as long as you are
not asked to account for it as a child or as an adult, the problem is non-­
existent. Tatiana—who was diagnosed after battling a depression—says
her feeling of being different as a child was also due to the fact that she
grew up as the daughter of a local vet in the countryside, where the other
children (farmer’s daughters) did not share her interests. Tatiana enjoyed
collecting stamps, studying maps and so forth. If she had known children
who had had the same interests as her, the feeling might have been less
pressing. Another story comes from Els, who had a very sheltered upbring-
ing. The problems first presented themselves when she found herself in an
extremely difficult working environment:

Yes I read that most people are diagnosed when they’re adults, when their chil-
dren are diagnosed, when they encounter problems at work or when they have
children. In other words, when your life becomes too busy. Too much stress. With
me, that didn’t happen because of my strong family network I guess. My chil-
dren have also sometimes been a source of stress, but not excessively. I had work,
a career, and my parents and my in-laws took it in turns to pick the children up
from school. The children could come home peacefully after school, they could do
their homework, they got an afternoon snack and if I was late, dinner would be
prepared, always around six. [Els]

Els was diagnosed after three years of treatment by a psychologist, who

eventually did not know what to do with her anymore. Bullying by a
supervisor at work had caused her to break down and she attempted sui-
cide. Before all this, her life had always had a structured and protected
course; she was a top student at school and got high grades at university.
We find a similar story with Kris (45), who was diagnosed four months
before the interview. He explains how he had a sheltered upbringing, with
a well-defined structure within his family:

But yes all my life I have had the feeling that I’m different than others, and yes,
there have also been several incidents. Until I was 12, I did have a structured
family, my parents and my sister and everything was nicely organised. In the
diagnostic study, they also noticed and determined that my parents – without
realising it – always compensated for what I could have difficulty with, or what
I struggled with. [Kris]
46 K. HENS AND R. LANGENBERG

Even though he always felt different, Kris explains how the problems
really started in the final years of secondary school and the first years of
higher education, since part of the structure that was present during his
childhood and puberty was no longer there. In 2008, Kris already sus-
pected he met the diagnostic criteria for autism, but he faced resistance
from his psychiatrist. He was of the opinion that Kris, because of his higher
education, steady job, strong verbal capacity and his lack of specific physi-
cal characteristics of autism, did not fit the picture. Kris recently had him-
self tested, as a result of his divorce:

I already had a suspicion in 2008, but it was actually moved aside by both psy-
chiatrist and psychologist because I’m very high functioning and I have a uni-
versity degree, Master of communication sciences. I’m also an educated social
assistant, option social-cultural work, so I have an additional degree in social
studies. I work fulltime and I have a high-ranking official position. […]
The fact that I was always very able to adapt to all kinds of circumstances,
was able to develop a lot of coping strategies, played the chameleon a lot, have
always tried to meet other people’s wishes, I always kind of slipped through, so to
speak. This is why the autism has only now, under my direction actually, been
effectively diagnosed. But I had already experienced periods of serious depres-
sions, often after relationship problems, heavy breakups. So there have been quite
some signals. I have also always had that feeling like “I’m different than oth-
ers” and searched for a long time what it could be. In 2008, after a heavy
depression and a breakup, I actually really started to search for “what is this
with me? Now I want to know”. I crawled behind my laptop and pc and looked
up everything I could find on the internet, and then pretty soon I got to the
conclusion… by reading about it and facing it, I identified tremendously with
what was called Asperger’s syndrome at the time, what now – in general
terms – is called autism spectrum disorder in DSM-5. Anyway, it was really
pushed off the table by the psychiatrist that treated me, who told me: “You, that
can’t be, that’s impossible”. This is of course the pitfall for a certain group of
autistic people who indeed function very highly, but with respect to suffering,
with respect to problems from within, experience the same issues all autistic
people experience. I really did suffer a lot, yes. [Kris]

Our respondents describe how, in their lives before the diagnosis, they
often had the feeling they could not hold their own under both external
and internal pressures. Bluetopian had himself tested in 2015 after his
psychologist expressed the suspicion that he might have Asperger’s. He
had already experienced several years of mental suffering. He writes about
his unstoppable train of thought: “Where is the off-button? There isn’t
 PERSPECTIVES ON SUFFERING 47

one. It goes on and on… That’s really exhausting…” With this, Bluetopian
expresses the idea that thoughts can no longer be suppressed. Robyn had
herself tested more recently, also after her psychiatrist suggested it. After a
suicide attempt when she was 12, Robyn ended up in adult psychiatry,
where her autism was not recognised. Robyn describes a similar experience
and calls it a train of thoughts:

But for instance, if I receive a message from a friend – yes I really have a TGV1
of thoughts, that’s extremely exhausting, too – but with me, they have been able
to prove it in the tests, that my processing speed is very high. So that really means
it’s flash flash flash flash flash and that’s how it is. And I also notice it, that
when I get such a message, then it starts with me like: “yes but what does she
actually mean with that, does she want to say it like this or like that, is it based
on that, did I do that wrong…” [Robyn]

Robyn describes here how her thoughts dominate her, how she thinks
things through too far, which is very exhausting in itself. She furthermore
explains how her friends sometimes can’t follow that, and how that leads
to misunderstandings since she has thought out too many connections,
while her friends have not yet reached that conclusion.
A few interviewees describe the tendency to dwell on certain things too
long and too deeply. This often leads to incomprehension on the employ-
ers’ side and an impossibility to move forward. People are faced with a
world wherein everything is expected to accelerate constantly. The next
quotation illustrates how Bas has problems with the demands from the
outside world, for instance that certain imperfections should be over-
looked. Bas himself suspected he had autism for a long time and had him-
self tested recently. He describes how his desire to stick to content leads to
conflicts:

I always say: if I had smiled a bit more now and then, and chatted along a bit,
I wouldn’t have gotten into trouble. If you’re at work every week with your
issues like “The way we are doing it now, why don’t we do this or that”, you make
yourself extremely unpopular apparently, while you’re saying it all in a good
cause. Apparently it doesn’t always go over well, both with the colleagues and the
bosses. Sooner or later, it becomes a bomb and the other will fire me, right. It
basically doesn’t happen the other way around. [Bas]

1
Train Grande Vitesse (fr), or high-speed train.
48 K. HENS AND R. LANGENBERG

Many respondents describe difficult periods, either right before the

diagnosis or throughout their entire life. Samuel was already diagnosed
with autism combined with mental disability when he was five years old.
He is also epileptic. Samuel has several degrees in higher education, and
when he was 30—after a depression—he was diagnosed again. Michael’s
ASD and Non-verbal Learning Disorder (NLD) diagnoses came after a
stay in a psychiatric hospital because of a burnout (he worked in a bakery
where he had to work more than 60 hours a week).
For a few interviewees, the suggestion that they would have autism was
quite unexpected; for others, it was something they themselves already
knew, for instance, because they had children with a similar diagnosis.
Sofie had already had herself tested eight years ago because she suspected
she had autism, but the test was negative then. Her son was diagnosed
with Asperger’s syndrome and after taking a course for parents of children
with autism, she recently had herself retested. ASSpirin identified with the
description of autism when she trained to be a nurse seven years ago. After
her niece’s diagnosis, she ended up with the Flemish Autism Association
(Vlaamse Vereniging Autisme [VVA]). There, she spoke with a woman
who had autism, whose story she immediately recognised.
Albert had himself tested on the recommendation of a psychiatrist
whom he visited because of depression. His son was diagnosed with
autism, but the suggestion that this diagnosis also applied to him came as
a surprise:

Due to a heavy depression and concern from my partner and my son’s psycholo-
gist (who’s ASD was not yet determined at that time), I ended up with a psy-
chiatrist. During our first conversation, she’d already mentioned she suspected
it to be ASD. My wife and I were completely taken aback. I wanted to see proof
first through further examination. [Albert]

For Robyn, the diagnosis also came as a surprise. She was a bit reluctant
at first as well, given the fact that she had already been diagnosed several
times with several disorders ever since she was young: generalised anxiety
disorder, borderline personality disorder and schizotypal personality
disorder:

I actually went to the psychiatrist for a different reason, and he has… After
two-three conversations he was like: “Yeah, I think I would like to have you
tested for autism.” I really laughed at him, I remember it very well. Like yeah,
how did you get to that. Like, don’t I have enough labels already, gee. [Robyn]
 PERSPECTIVES ON SUFFERING 49

A bit later, Robyn explains that she connected the syndrome of Asperger
to Kim de Gelder, the young man who stabbed and killed several children and
carers in a Nursery in Dendermonde in 2009. After the tests and the appro-
priate explanations, however, she completely agreed with her diagnosis.
A few of the participants experience certain aspects of modern life, such
as computers or telephones, as problematic because these technologies
cause extra pressure. Hannah has been a teacher for a while and identified
with the descriptions of autism when she read about the topic for her job.
She also always felt different, and her partner agreed that there could be
something else going on with her. She describes how it is difficult for her
to find peace in modern life:

Now everyone has to participate in that busy life, and a lot more people experi-
ence just how heavy that extra pressure is. And then it comes more to the surface,
because if I for instance, when I went to uni it was much less for me, that pres-
sure. Because I had – that was just before the big computer and internet era – so
I also didn’t have a computer in my room or something. So I found a lot of peace
there, and because I found it I was also a lot less panicky and I had less negative
effects of autism because I had to deal with it less. And that became stronger
when I started working. [Hannah]

Throughout this interview, it becomes clear that Hannah experienced

her time at the university as very pleasant. She links this to the fact that at
that time, she was able to fully focus on a subject of her own choice, and
she could generally interact with people with similar interests. Bas makes a
similar remark about the problems in this day and age. Phone calls are
problematic for him, and he thinks life would have been much easier if he
had lived one or two centuries ago. Further on in the interview, he also
mentions a fascination for the Scottish Highlands, which symbolise peace
for him:

A telephone for instance, just the medium. I would have been much happier if
it just hadn’t been invented. I actually have the same opinion about almost all
telecommunication. If I just would have been born a century or two ago, life
would have been so much more agreeable, I think. If you arrived at work in
those days, there would just be letters waiting for you, that’s fantastic. I would
give a lot to go back to such a situation. [Bas]

Tatiana also describes how she considers the current communication

tools such as emails to be too transient. She often finds herself writing
50 K. HENS AND R. LANGENBERG

emails that others consider to be too long. She needs that margin, how-
ever, to be able to write down what she actually wants to say, and she
explains that this is why she sometimes yearns for the old-fashioned
letter.
Another kind of pressure people experience is the pressure to meet an
ideal image that eventually appears to be unattainable. Baukis was diag-
nosed at a later age, she was already 58. Because of an eating disorder, she
spent a few months in a mental hospital as a young girl of 16. All three of
her sons, 20 somethings, have been diagnosed with autism. She worked as
a volunteer for the VVA and noticed that she had an increasing amount of
things in common with women with autism. Raised in a catholic family
that highly valued being a good and wholesome catholic, Baukis always
had to contend with an ideal image she could not live up to:

Wanting to be a good catholic, that’s actually not so easy in reality. The older I
got, the more mistakes I made against that ideal image. Answering to those
high values became more and more complicated, and the discrepancy between
my ideal image and the realistic image grew bigger and bigger. Eventually, it
tears you apart. [Baukis]

A few respondents express the feeling that the more they try, the worse
it gets. In the long quotation below, Tatiana describes how she finds it
very difficult to plan practical things and bring them to a good end. She
illustrates this by telling a story about how her focus on detail had a large
impact on the bigger picture:

So I am always concerned with doing it right and then I make a mistake. That
happened as well, not so long ago in Sardinia. I had booked a flight, back to the
Netherlands, and had to go from one side of the island to the other side to get
there. But there in Sardinia the public transport is tremendously bad. And I
had no money at all, and on holiday everything has to be as cheap as possible. We
couldn’t do anything there because we had no money. And then I had to find
out how we could get to the airport in time, that day and with that much
luggage.
[…]
I was so tense then and thinking that it couldn’t go wrong. I had really
worked it all out very well, I specifically went to the station because it isn’t all
on the internet. I went to the station, took pictures, the trips to that city where
the airport is. There was only one train in the morning, we had to have it, that
was at seven o’clock. I memorised that very well, I stayed awake all night, called
 PERSPECTIVES ON SUFFERING 51

the taxi, at half past six, the station is nearby, all went well. I stayed up all
night and my husband too so we wouldn’t be too late. Then we arrived at the
station and went to buy tickets. And then they said that I could validate the
tickets in an hour and a half. I say: “yes but the train leaves in about ten min-
utes.” They reply: “no, in an hour and a half.” I say: “no in about ten minutes.”
Turns out the train had already left at six. We couldn’t catch it anymore. Yes
then we had to take a cab for about 200 euros. I had to pay it, but we did so little
during our holiday because we had no money, and then my husband was really
very angry. And those kinds of things happen almost every day. [Tatiana]

This quotation illustrates that she, just by trying to do everything right

because it is so important, does not see what is happening, that her initial
assumption is wrong. By starting from untested hypotheses, then blindly
following that track and not connecting it to reality, Tatiana gets in
trouble.
Some of the participants describe how they feel that they have no
boundaries, which makes them want to go too far. They have trouble
laying down a type of structure or rules in their lives that would enable
them to sense when something is supposed to happen. A few partici-
pants describe how difficult it is for them to implement a healthy sleep-
ing pattern:

I theoretically know perfectly well what sleeping hygiene is: going to bed in time,
turning the TV off, getting stimuli-free, unwinding, drinking a cup of tea,
going for a little walk… Rationally, I know very well what I am supposed to do,
but I can’t. But I already have this for twenty, twenty-five, thirty years, so since
I left my parents’ home, that in the evening I become more active the later it
gets, can be very focused like yesterday, when I’m looking up info on triathlon.
There, another article and another one, ah start to swim and start to triathlon,
and that’s two, three, four o’clock at night. So that’s something I have a lot of
problems with, to create enough sleep. Well that has been going on for months. If
it goes on like this, I will probably crash again because with three hours of sleep
a night I’m not going to make it. [Kris]

Kris describes how he, although he knows rationally that he needs more
sleep, and also knows what he has to do to get it, still is not able to do it.
Tatiana explains how she writes long emails to her employer until the early
hours of the night, and actually realises that the employer in question does
not appreciate this at all. Still, she often relapses into this pattern. Mickey
also speaks about how impossible it is for him to stop doing a certain
activity:
52 K. HENS AND R. LANGENBERG

I rarely interrupt an activity. If I’m doing something, I want to do that for-

ever, that’s the ideology behind it. That is why I don’t really have a problem
with overtime. When I’m working I just want to keep working, I’m in that
mode anyway. When I’m on my PlayStation I want to keep playing with my
PlayStation. When I’m sleeping, I want to continue sleeping. When I’m
awake, I want to stay awake, that’s why I’m awake until two at night, just
because I don’t want to go to sleep, because I feel that the day can’t be over
yet… [Mickey]

Mickey describes it as a ‘mode’, and refers to a period of intense con-

centration on something specific, for instance his work (as a welder) or
gaming on his PlayStation. It is almost impossible for him to stop it, which
leads to sleep deprivation.
The previous quotations illustrate that the respondents often suffer,
and specifically experience many and long-lasting insecurities concerning
their person, and how to participate in life. All our respondents have
sought for help to find more clarity about themselves. The initiative to get
tested came from the participants themselves, from their partners or from
a psychiatrist. Some of them were recently divorced or decided to get
tested because of the strain on their relationship. Carl, for instance, had
himself tested after a long period of conflict and after his then-wife—who
suspected Carl might have Asperger’s—suggested it to him. With Matteo,
it was his father—a history teacher—and his sisters, who in 2007, after
periods of ongoing arguments, suggested he should have himself exam-
ined for Asperger’s syndrome. Tatiana describes how she experienced a
very difficult period after her parents passed away and after she separated
from her previous husband and lost a lot of her friends:

I have been through some hard times: my parents passed away, I went through
a very nasty divorce and lost everything. And then I ended up in a very differ-
ent social, spiritual position or something. I lost all of my friends, and at that
moment I had already very much accepted that loss, and now they’re slowly
coming back to me. But I already processed the loss, or at least, I have already
accepted it. So yes, if they come back or not, if they do come back it’s nice, but I’m
not going to try as hard as I used to. If they don’t come back I have accepted it
anyway. [Tatiana]

Mickey had himself tested after his wife recommended it, although
he already suspected as much, also because his brother has a similar
diagnosis:
 PERSPECTIVES ON SUFFERING 53

Technically, yes, but the suspicion has always been there. I have never had the
intention to get myself tested. I was afraid perhaps, I don’t know… my wife also
wanted to know for if we were to make children, because it’s hereditary.
[Mickey]

But he also sensed that at a certain point, it became impossible to con-

tinue working at the same pace:

Yes, I really worked there up until the point I became unwell. I had to throw up
because of the stress and I stayed home for five weeks. I then started working
again at a slower pace, but that pace was increased immediately. And then, I
had a temporary fixed contract so I couldn’t hand in my notice. I had to work
there until the beginning of September, but I agreed with them, I had made an
agreement that I wanted to quit sooner. That has to happen in agreement with
the boss, and they finally agreed with the 1st of August. [Mickey]

Our respondents often mention the tension between the desire for con-
tact with others on the one hand and problems to maintain this contact on
the other hand. For some, this went hand in hand with a feeling of loneli-
ness, as Tatiana says: “I love the people very much but I just can’t maintain
the contact. I think that’s very sad because I’m quite lonely.” In the next
quotation, Bluetopian describes how he suffers a great deal from that
loneliness:

Loneliness is an understatement for me. I suffer a great deal. So yeah, there is a

difference with what’s ‘mainstream’. Do I really have to be ‘mainstream’? No,
not at all. But I belong to the category of autists who do need social contacts.
Establishing – and particularly maintaining – those social contacts is dis-
turbed. This leads to great loneliness, which causes a great level of suffering.
[Bluetopian]

Here, Bluetopian opposes the thought that all autists are supposedly
people who don’t need contacts, and refers specifically to different ‘kinds’
of autists. He also refers to the fact that this loneliness is existential, which
implies that such a loneliness is very difficult to prevent and is more than
a simple lack of contact. Throughout the conversation, it also becomes
clear that Bluetopian felt this loneliness both before and after the diagno-
sis. Contact with other autists does not necessarily mean that he feels less
lonely: “Even within the world of autism, I feel the odd one out… very
painful!”
54 K. HENS AND R. LANGENBERG

Loneliness is also related to the feeling of being an outsider, something

that causes a lot of suffering. In the quotations below, Kris describes his
attempts to fit in and how he never really succeeded:

A nice word I learned the past weeks is ‘level of suffering’. I really suffered from
it, especially because I didn’t feel at home with others. Even though I’m present
amongst others, I will still feel alone there. That is also something which often
comes back: that I feel as if I’m not included in a group, even if you are physi-
cally included or even mentally or whatever. But still never having that feeling
and always feeling that you’re the outsider, yes that feeling has always been pres-
ent very strongly….
[…]
I never really fully felt at home, I was with a football club but okay I played
along and all and tried to go along as much as possible with that group process.
And yet I always felt the outsider. I have always felt to be the outsider, also at
work, and also with friends: like never really being able to connect, like never
really belonging to the group. [Kris]

Other respondents felt the loneliness much less. BartDelam ended up

in depression caused by exhaustion in 2012, which was the reason for him
to get tested. For a long time, he suspected he could be autistic, even
though he also had his doubts. During his work as a social nurse, he mostly
came into contact with people who also had a mental disability, besides
autism. He did not really identify with their situation. BartDelam describes
that he has less need for contact with people than others do, and that he
also does not really miss people:

Thanks to my girlfriend, and thanks to my ex-wife before, I have a lot of social

contacts. Sometimes too many, because I actually have little desire for it and it
often feels like a social obligation. The initiative for social contacts hardly ever
comes from me. If I was alone, I would very rarely contact others. The degree of
connectedness with others is hard to measure, but should the people around me
die, there are very few of them I would really miss. [BartDelam]

Even though BartDelam somehow realises that others consider it to be

normal that you need people around you, and to miss them when they are
not there, he does not sense that himself. He describes it as “a different
feeling of connectedness”.
One of the questions we asked during the interview was if the respon-
dents were worried sometimes, and what they would worry about. We
 PERSPECTIVES ON SUFFERING 55

noticed that many of them answered “about everything”. They were wor-
ried about the world, about loved ones, about themselves, about changes,
about unpredictable events….
Vic was diagnosed with autism at two different times, both times when
he was hospitalised due to psychoses. He describes how he completely
panics when he loses overview. He is often not able to effectively do what
he had planned to do that day:

I panic when I lose overview… When I don’t feel well-prepared or when I’m not
well rested because of circumstances. When I’m not well rested there is a real
risk, then it’s as if my brain is only switched on for 50%. Then it’s precisely as if
that side is lame, tame, or not there. Then it starts with like some sort of dead
end street and it always becomes… But yeah and then… Then it is very difficult
to like, when there’s something wrong from the start, I have a very hard time the
rest of the day… [Vic]

He furthermore explains how a single event can mess up his entire plan:

No, no I can’t let it go. It can also just be something physical right, because I’m
too tired, I get dressed too slowly when I have an appointment which means I
have to hurry all of a sudden and then… It can be little things right, it can be
that I forgot to put my ring on. That’s a disaster for me. Then I find out when
I’m on the train and then not even one third of my day has passed, but then my
day is… And then I hold my breath, because yeah… [Vic]

For a few of the interviewees, concern is an overpowering feeling with

far-reaching consequences. In Hannah’s quotation below, the extent of
her worries and anxiety become clear:

Now? About everything… Yeah really about everything. I’m a very fearful
person. I’m also working with a coach, an auti-coach, and he tries to give me a
bit of guidance with it. He says that my most important, or my biggest problem,
is fear. That I continuously live in fear. And that I’m maybe not aware of it,
but that it’s my thoughts running wild. He tries to teach me a bit that it’s like
a radio playing and that I have to search for the off or exit button to find a bit
of peace. Yeah I really worry about everything. This life is actually too heavy for
me. I don’t really know how I can say it differently than that I worry about
everything, and about everyone and about how the whole world, and, yeah... I
also have to, I also notice, I have also learned it throughout the years, I also have
a great concern about the world and how everything happens in the world and
the people in the world. When I was a child, I used to give all my savings to
56 K. HENS AND R. LANGENBERG

Broederlijk Delen2 and now I just decided to no longer watch the news. I also
don’t watch unpleasant movies, I don’t watch things about the Holocaust or
things from Africa because I just can’t handle it anymore. [Hannah]

Hannah describes how she absorbs all the suffering in the world with-
out distinction, which causes her life to become too heavy and results in
her having to shut herself off from all these impressions. A few participants
take medication to supress their anxieties. Sandra has two children diag-
nosed with autism. A couple of years before the interview, she checked
herself into a mental hospital because of depression, she was in constant
pain because of a disease but could not take any medication because of an
allergy. During that stay, she was diagnosed with autism. She explains that
her fears and worries also have to do with a fear of change:

I’m someone who’s always worried. But for me it’s not really worrying. Its
rather something like: what’s going to happen, the unexpected, the unknown. Is
that being worried? No, for me that’s not just simply being worried. [Sandra]

Sandra describes how her fear for the unknown can no longer be
regarded as merely ‘being worried’. Kris also talks about his fear of the
unknown:

For instance, if I go to a seminar for work, it’s always something very fearsome for
me. Then I think, yeah, where is it and where do I have to go in and who is going
to be there and where am I going to sit? That’s always quite a task for me. [Kris]

Marie was admitted to the psychiatric hospital for a few months in 2007,
in the department of personality disorders. There, she was diagnosed with
borderline personality disorder, and she was encouraged to follow various
therapies, including group therapy, which she did not e­ xperience as healing
at all. When she left, she felt even worse. So bad even that she did not
want to live anymore and her suffering had become unbearable. This
made her decide to apply for euthanasia. During this application process,
the psychiatrist who was part of the team assessing whether or not her suf-
fering was unbearable enough to qualify for euthanasia suggested that
Marie should get herself tested for autism. Below, she describes how all-
encompassing that fear for change—also in herself—can be:

2
A Flemish organisation for development aid.
 PERSPECTIVES ON SUFFERING 57

There are also the fears that I fall prey to on a daily basis: fear of change, of the
unpredictable, the unknown, the uncontrollable. Fear to meet someone (known
or unknown) unexpectedly. Furthermore, I am also afraid to lose knowledge, to
disintegrate completely and lose myself. And then I haven’t even mentioned the
fear of the despair and sorrow that seem to devour me. Or fear of incomprehen-
sion when I try to explain my invisible suffering… [Marie]

Besides an almost unbearable fear, also of her own suffering, Marie is

also afraid of the fact that she can share this suffering with only a handful
of people.
A number of participants had—long before we had had our conversa-
tion with them—already considered or even attempted suicide. There is
Robyn, who tried to kill herself when she was 12, which caused her to
spend her entire youth in psychiatric institutions and which prevented her
from going to school. She graduated middle school through the examina-
tion board. The reason for her suicide attempt was the combination of a
sudden change from a village school to a large middle school and discover-
ing her being different. Baukis also undertook a suicide attempt when she
was a young girl. And then there is Els, who could not bear the bullying
at work anymore at a certain moment and considered suicide.
Nora (28) was diagnosed at 21. During her first year at a dancing
school, she went through a very difficult period and ended up in a depres-
sion. Nora describes how she sometimes fantasised about suicide as a pos-
sible way out, but no longer considers it, the fantasy is enough:

Even though I’m quite optimistic, I’m very bothered by what they call ‘black
thoughts’. It’s some sort of joy of life that’s missing. Ever since I was 6 years old,
I’ve had a strong death wish, and even though the concreteness of that wish is not
particularly present, thinking about ‘not having to live anymore’ has become
some sort of escape mechanism during difficult moments. I can talk about that
with some people, which keeps it ‘safe’ time after time. But it never goes away.
Even if I have very good moments, filled with joy, it often flashes through my
head that now, during such a blissful moment, it would be good if it all ended.
Then all worries would be over and there would be peace. [Nora]

In Belgium, it is possible to request euthanasia because of unbearable

psychological suffering.3 This is possible if it can be proven that the suffering
is hopeless, continuous and unbearable. You must be an adult, and several

3
Thienpont (2017).
58 K. HENS AND R. LANGENBERG

doctors have to be involved in the advice. Below, Marie further explains

what she experienced after her stay in a mental hospital:

When I left the mental hospital nine months later, I was 500% convinced that I
didn’t belong on this planet and I had learned even better to live with a mask
on. They told me I would experience recognition and acknowledgement in a
group. The only thing I found there was total confusion, superficiality (because
I didn’t dare show myself), annoyance with regard to the absurd therapies that
appeared completely futile to me, plus also misunderstanding from doctors and
nursing staff. Luckily, my depression had improved thanks to the medication
and a fellow patient – who became a good friend – pulled me through that
rough period. [Marie]

When she was eventually dismissed from the psychiatric hospital, she
felt that no one could help her, and that her situation was hopeless. After
discussion with her partner, she filed an application for euthanasia:

It didn’t go well: apparently I couldn’t survive without medication and when

autumn came, my suicide plans became very concrete again. As I saw it, I was
out of options: given my experience with psychiatry, another admission was abso-
lutely impossible. I had already tried therapy so often (with psychiatrists and psy-
chologists), I didn’t want any more narcotics and medication meant side effects
(such as weight gain with back problems as a consequence). When I discussed with
my girlfriend that I seriously considered suicide, she begged me to not suddenly
kill myself but to do it in a serene and soft way. Mid-October 2015 I handed in
my request for euthanasia because of unbearable mental suffering. [Marie]

After her diagnosis, Marie decides she first wants to work on that before
she continues with the euthanasia process. Marie’s story is an angry story
about how mental healthcare has dealt with her problems. During her stay
in the mental hospital, she was solely tested for personality disorders. If she
had also been tested for a developmental disorder, she would have been
diagnosed with autism a lot sooner. Her therapeutic path would have been
completely different and people might even have had more understanding
for the fact that group therapy was not helping her. Baukis also describes
that the time she spent in the psychiatric hospital when she was 16 has
done her more harm than good:

I’ll never forget the moment when I was brought into the mental hospital, it is
engraved in my memory. That was where now the Bijloke museum4 is and the

4
A museum in Ghent, Belgium.
 PERSPECTIVES ON SUFFERING 59

current conservatory. The psychiatric ward was underground, room 14–15.

You went through some sort of lock, the door behind you shut, locked. I had to
take off my clothes and hand over my identity papers. Again through a door,
which again shut behind me. I realised then that I – without clothing and with-
out papers – couldn’t get away anymore. I was 16 years old then. I stood in a big
room where there was no daylight, nothing. On both sides of the room a row of
beds with people everywhere, lying and hanging there expressionless. Am I like
that, for people to bring me here? Will I become like that? Well, then the light
goes out in your head, that’s really horrible. And that my parents brought me
there and left me there, that was the worst of all. [Baukis]

Baukis experienced her stay in the mental hospital as a punishment,

which made the ideal image she so desperately tried to meet, even more
unattainable.
Our respondents describe the problems and the suffering they experi-
enced throughout their lives. They describe a profound fatigue, which
they explain by referring to the rush of everyday life, but also to their own
thoughts, which go on and on and on. They are often burdened by per-
fectionism, which makes the impossibility to meet an ideal image the cause
of much suffering. They describe many fears: the fear of loneliness, the fear
of conflicts with the people around them, the fear to lose overview or the
fear of unpredictability. Also, a fear of negative reports from all over the
world. The feeling of fear has also been studied by Trembath and col-
leagues in their paper The Experience of Anxiety in Young Adults with
Autism Spectrum Disorder. Using two focus groups, one with adults
between 18 and 35 years old diagnosed with autism, and one with profes-
sionals and parents of adults with autism, they investigate how autistic
people experience anxieties, what the causes and consequences are, and
how people deal with this. They also report the not understanding of what
is expected in social situations, the loss of control when unpredictable
events occur and a broader concern about other people’s fate and the
world in general as primary causes of fears.5 In the next chapter, we will
further examine the diagnostic process and the interviewees’ experience of
being tested.

5
Trembath et al. (2012).
60 K. HENS AND R. LANGENBERG

Bibliography
Thienpont, Lieve. 2017. De pijn van anders zijn. Gent: Academia Press.
Trembath, D., C. Germano, G. Johanson, and C. Dissanayake. 2012. The
Experience of Anxiety in Young Adults with Autism Spectrum Disorders. Focus
on Autism and Other Developmental Disabilities 27 (4): 213–224.
 CHAPTER 4

The Experience of Being Tested

Abstract This chapter explores the different tests that are available to test
for autism and lets the respondents explain what their experience was with
these tests. Some respondents were very happy with the tests, others were
more sceptical. Many respondents have already had different diagnoses
before their autism diagnosis (ADHD, NLD, MCDD, borderline, depres-
sion, etc.). This chapter also adds some critical notes to the current
approach of autism and diagnosing adults. Some respondents ask them-
selves how an institute specialised in autism can be objective when diag-
nosing autism.

Keywords Autism • Diagnosis • Psychological tests • Psychiatry

© The Author(s) 2018 61

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_4
62 K. HENS AND R. LANGENBERG

After periods of severe problems which raised a desire in them to find an

explanation for what was happening, many participants decided to undergo
testing for autism, often on the recommendation of a psychologist,
 THE EXPERIENCE OF BEING TESTED 63

psychiatrist, partner or family member. Some of the respondents went to

a specialised facility, while others were tested during their stay in a psychi-
atric hospital. In addition to conventional tests for autism such as Autism
Diagnostic Observation Scale (ADOS-2) and an anamnesis with family
members, our participants also underwent cognitive tests. A few were
happy with the scientific validity of the tests that were used. Others were
curious about how such a test could determine autism. It was remarkable,
however, how little explanation the researchers provided about why exactly
they had come to the conclusion ‘autism spectrum disorder’ after testing
our respondents.
Although various respondents offered us their diagnostic reports, we
made the conscious decision not to look at them before the interviews.
After all, the main focus of our project was how the participants experi-
enced their diagnosis and the accompanying diagnostic process. The same
goes for intelligence tests. Even though during the interview, some of the
interviewees spontaneously shared the results of their IQ tests with us, or
used expressions such as ‘moderately intelligent’ or ‘above average intel-
ligent’ to describe their own level of understanding, we did not use this
information in our analysis of the conversations. Before the interviewees
described their individual test experience, we did provide them with some
background information about the tests they could remember.
Many participants indicate that they went through a combination of
cognitive tests and tests specifically aimed at determining autism. Besides
the specific anamnesis, Marie remembers the following tests that were
used for her:

IQ; WAIS IV
Attention: Bourdon-Vos, Stroop Colour-Word test
Memory: fifteen words of Rey, complex figure of Rey
Executive functions: Tower of London, Wisconsin Card Sorting
test
Central coherency and ToM: completing dialogue, Rakitplates, How is …
feeling? Stories of Dewey, Stange stories
Happé
Problem Solving Skills
Perception survey: projective material, four affects, conversa-

tion with test leader
Questionnaires: SCL-90, AQ, BDI-II-NL. [Marie]
64 K. HENS AND R. LANGENBERG

Some participants mention autism-specific tests such as the ADOS-2 or

inform us that their parents, partners or friends also underwent an anam-
nesis. It is striking, however, that certain participants mainly mention
­cognitive tests. More specifically, tests that presuppose a certain theory
about autism (ToM, executive functions and central coherence).
Carl’s most vivid memory from the test sessions is the assignment to
draw a bicycle. He drew it from left to right, first the wheel, then the
handlebar and so on, finishing at the right-hand side of the page. He was
told that this deviates from what the average person would do: a normal
drawing style would be to first draw both wheels, and only then to com-
plete it with the other elements of the bicycle. Another drawing test the
participants mention is the complex figure of Rey.
This drawing test is aimed at indicating whether someone has a good
memory, it tests planning, organisation, problem solving, memory and
perceptual–motoric functions. In the context of autism, it is also used to
measure central coherence, the ability to see a whole instead of only the
details. If the participant begins by drawing the outline, this can indicate
more central coherence. If the participant initially draws a few separate
details of the picture, this would indicate a deficient central coherence, as
the following quotation indicates:

And yeah, so I started drawing, a line and a line, and a little ball there and a
little line there… Especially when, after twenty minutes, they asked me a second
time if I remembered the drawing, and if I would be able to draw it again, I
only remembered a little line here and a little ball there. And then, afterwards,
they said yeah well that’s actually just a rectangle with two other triangles in it
or something, and everyone sees that, and apparently I didn’t see that. I thought
that was really… Then I thought like yeah I really see the details and not the
whole, such things really struck me about myself. [Hannah]

This is what Sofie has to say about the test:

Drawing that picture, that went reasonably well. During the evaluation they
said: “You start with the details, you do see the whole,” I am apparently quite
focused on detail. [Sofie]

Sofie had received the results of her test only two-and-a-half weeks
before the conversation with us. Eight years earlier, she also had herself
tested for autism, but then the test was negative. They told her that, if she
 THE EXPERIENCE OF BEING TESTED 65

indeed had autism, it would probably only be a mild version. Sofie also
remembers that she had to take other tests eight years ago. Her explana-
tion for the fact that the test results are different now, is that back then, a
lot less was known about women with autism:

Then, they already knew more, but I think that now, they know even more…
Back then, they also didn’t know that women have a different form of it than
men do, right, they have figured that out more now right, maybe that’s the rea-
son too, that women are also more social, right. [Sofie]

In addition to tests on central cohesion or focus on detail, our inter-

viewees also mention tests that study certain executive functions. Executive
functions are cognitive processes that make sure that we can plan ahead,
and that people can solve problems purposefully. One theory about autism,
which mainly explains why autists have a preference for structure and
repetitive actions, states that they have a deficiency in those executive
functions. Our participants also mention that they had to stack wooden
beads (Tower of London Test) or sort cards (Wisconsin Card Sorting Test),
they had to do tests that had them plan their shopping or find their way in
a zoo. Tests which were originally solely used for the purpose of testing
memory were now—in the context of autism diagnostics—apparently
used to verify certain aspects we associate with autism. Baukis illustrates
her personal test experience with Fifteen words of Rey as follows:

The psychologist who tested me said 15 words out loud, which I had to try to
repeat afterwards. According to the test leader, I scored relatively well on that,
I had an average amount of words right. He didn’t mention at the beginning
that he would repeat this sequence of words several times during the full course
of testing, every time with the intention that I had to repeat as many words as
possible. Every time I remembered about a similar amount of words, but not the
same words every time. Only the last time, while I was reciting the words, I
realised that I could have fabricated a story from the different words, in order
to remember them more easily. That signifying and making connections appar-
ently happens a lot later with me than with other people. [Baukis]

For Baukis, this test took a specific course because she only started to
use semantic connections to remember a list of words at a later part of the
test. Further on in the conversation, she says that she considers autism a
predominantly cognitive problem that can also be characterised by a rec-
66 K. HENS AND R. LANGENBERG

ognition of, for instance, sounds and word forms as such, without auto-
matically connecting a meaning to it. This is something neurotypical
people would do more easily.
Participants remember tests that have to do with the performance of
ToM: the ability to empathise with someone else’s experience or feelings,
in other words to imagine the perspective of the other. They mention the
Reading the Mind in the Eye test, developed by Simon Baron-Cohen and
his colleagues. This test assumes that the eyes are the mirrors of the soul
and that, just by looking someone in the eyes, we should be able to deter-
mine what he or she feels. Autistic people supposedly score significantly
lower on this test than neurotypicals. The Strange Stories of Francesca
Happé, stories that test whether people can effectively sense someone
else’s perspective, are also mentioned by the participants. An example of
such a strange story:

A burglar, who has just plundered a shop, rushes to leave the scene. While he
is running, a policeman, who is doing his rounds, notices that he drops a
glove. He does not know that the man is a burglar. He only wants to tell him
that he dropped his glove. But when the policeman shouts at the burglar:
“Hey, you! Stop!” the burglar turns around, sees the policeman and surren-
ders. He holds his hands high and confesses he broke in to the neighbourhood
shop.

Annelies Spek1 tells us how this test is to be scored. The diagnostic will
for instance ask: “Was the policeman surprised when he heard what the
burglar said?” or: “Why did the burglar do that, when the policeman only
wanted to return his gloves?” A right answer would for instance be that
the burglar thinks the policeman wants to arrest him for the break-in. We
could, however, think of a variety of correct answers, on the basis of which
we are not able to rule out, but also not to conclude, whether the indi-
vidual test candidate is able to imagine what went on inside the burglar’s
head. For instance:

–– The force and intensity the policeman uses in his voice to stop the
burglar, cause the burglar to suddenly realise there is a possibility
that the policeman witnessed everything he did, even though he did
not notice him before.

1
Spek (2017).
 THE EXPERIENCE OF BEING TESTED 67

–– The burglar thinks that the policeman thinks it is suspicious that he

ran so fast and he will therefore suspect that something is not right.
It is therefore better for him to tell the truth.
–– The burglar could have remained stoically silent, but he did not do
this because he was out of breath and less alert.
–– Doesn’t everyone feel like the guilty party when a policeman asks
you something? When there is a police car on the motorway, doesn’t
everyone exhibit exemplary driving behaviour all of a sudden?
–– The policeman does not have to shout: “Hey, you!” If he had just
shouted: “Sir!” in a friendly tone of voice, the burglar would have
had a better chance to respond differently. Even if he had said: “Sir,
your glove”, the whole event would have been less tense and the
burglar could have responded in a much calmer way.
–– A policeman in uniform always means trouble.
–– The burglar thought: “If I confess everything at once, I might be
able to make a deal with the policeman.”
–– A policeman is always armed and the burglar was so afraid that some-
thing worse would happen, that he spontaneously confessed
everything.
–– You can always tell if someone is guilty of something, the burglar
knows this. No matter how good the lie, there is always an element
that gives you away.
–– He who is in the right, has a strong position. The burglar was not in
a strong position. This is even the case when two people argue with
each other. The one who is in the right, has the strongest position.
The burglar knew this and that is why he confessed to everything.
–– The burglar was so nervous beforehand and was so afraid that he
would get caught, that he did not realise the policeman stopped him
for a different reason.

In short, we can ask ourselves what this question and the correspond-
ing ‘right answer’ is supposed to prove.
In the Handbook of Assessment and Diagnosis of Autism Spectrum
Disorder,2 which is 478 pages long, only one chapter discusses the diagno-
sis of adults. This chapter contains 16 pages, including references and the
disillusioning conclusion that:

2
Iliani Magiati (2016).
68 K. HENS AND R. LANGENBERG

Currently, little is known about how best to assess and support individuals with
ASD in adulthood. We also know little about the developmental nature of the
condition beyond young or middle adulthood. Although assessment of adults
with ASD should be comprehensive and lead to specific recommendations for
support, provisions, and interventions, there are currently very few professionals
with the required expertise and skills working with adults with ASD who can
actually implement these recommendations, while adult services continue to be
scarce in most countries.3

Apparently, according to the official literature, little is known about

how to diagnose and help these adults. This is remarkable, as more and
more people are being diagnosed in adulthood. There is, however, a table
of tests available that could be used, mostly tests such as the ADOS-2 and
the Social Responsiveness Scale (SRS), which was originally developed for
children. The ADOS-2 is a standardised observation-instrument for com-
munication, social interaction and (imaginative) play, which is used to
observe whether the criteria for autism are present in a person. You can,
for instance, ask children to re-enact a birthday party and observe how
they interact. With older children and adults, the emphasis is more on
conversations, understanding and the role of emotions.
In the stories our participants tell us, the abovementioned cognitive
tests are—in addition to the standard instruments—an integral part of the
diagnostic test they had undergone to determine autism. This might be a
result of the assumption that normal to highly intelligent adults have
often learned to conceal typical autistic behaviour, which means that the
usual behavioural observation is not sufficient to come to a substantiated
conclusion. This is probably why certain diagnostic centres have decided
to include tests that focus on certain cognitive differences, such as mem-
ory tests or tests that determine how well people are able to read feelings,
as part of the diagnostic. In this way, the practice starts distancing itself
more and more from the original definition of autism as a behavioural
diagnosis, as specified in the DSM. The determination of a deficient—or
high functioning—memory, or deficient central coherence, executive
functions or ToM can of course be very informative clinically. If these tests
are part of testing for autism itself, we encounter the problem of ‘tauto-
logical testing’. Research in cognitive science has established that people
diagnosed with autism statistically do not score as well (or ‘different’) on

3
Idem.
 THE EXPERIENCE OF BEING TESTED 69

the ­complex figure of Rey (central coherence) or on the shopping test

(executive functions).4 Can we conclude from this that these tests are then
automatically a fitting diagnostic tool to test autism itself?
The DSM-5 definition of autism spectrum disorder establishes that
autism diagnostics are based on experience, the observation of behaviour
and an assessment of the level of dysfunctioning in society. One point of
criticism could be that these tests are not so much used for the results of
the test itself, but rather as a way to observe behaviour during testing.
Robyn describes:

They also did things very consciously during the tests to see how I would react,
and mostly also focused on that… So basically they read between the lines, and
not just did the tests and that’s it. So you have to, like, do you know the test with
the little balls? Yes? Well yeah, the four little balls. At a certain moment she
started to very consciously click with her ballpoint, and she says, yes you can see
it immediately, the line where I clicked, five seconds more reaction time. So I
was very quick, average level was 9 seconds, but on the line where she did that,
it was 13 seconds all of a sudden. Immediately. Or if she would turn on the
lights. She said, up and away, again, skyrockets immediately. [Robyn]

The goal of the test is to both test for executive functions and test to
which extent someone is sensitive to sensory stimuli, sound in this case. It
is interesting to note that in the three most-cited theories on autism (ToM,
weak central coherence and weak executive functioning), the sensory sen-
sitivities are considered to be a side issue. We can imagine that a theory on
autism that localised the ‘basic deficit’ of autism mostly in a different sen-
sory perception would perform different tests. It is not really problematic
in itself that specific theories on autism are tested during a diagnostic pro-
cess. It can be very informative to know whether someone has problems
with executive functions or with understanding the perspective of the
other. In that capacity, these tests can be part of a profile of strengths and
weaknesses. It is still necessary, however, to integrate this in adequate
counselling of the person in question.
Participants are often very happy with the scientific level of the tests
that are being used. Baukis explains:

I’m so happy with how the test has been performed, because it initially tested how
I process information. Not my background, not my story, not my motive to get

4
Kushner, E.S., Bodner, K. E., Minshew, N. J. (2009).
70 K. HENS AND R. LANGENBERG

myself tested. That also happened, but only afterwards. The tests examined how
my learning process evolves, how my memory works. What do I see in an image,
what do I remember, what do I pick up from a story… Because yeah, that’s what
autism is essentially about for me: a different way of processing information.
Period. [Baukis]

With her children, testing was done differently, with more emphasis on
background and story, but that is a side issue for Baukis. Samuel also
describes how happy he is that the testing was done in a serious manner.
He does not agree with how the media report on these kinds of diagnostic
processes, as if it were ‘flick of the wrist’ diagnostics, administered in a
rush and without method:

It certainly helped me, in the sense that I got an image of how diagnostics was
done in a serious way, and that the reports in the media are completely wrong.
But it also helped me in the sense that I know that I definitely don’t have schizo-
phrenia or mental disabilities or psychopathy. It ruled out many possible expla-
nations, even though there are people who still think that. It also helped that they
made a written report, and that it could be a beginning of a road towards a
better life, on the one hand to learn to understand others and also a little to
protect myself. [Samuel]

Samuel describes how the tests, by determining autism, could exclude

other diagnoses, and how having a written declaration has given him a
foothold that enables him to keep going. Still, a few participants question
how it is even possible that tests can determine whether or not someone
has autism. In the fragment below, Sandra calls autism an ‘exclusionary
diagnosis’:

Yeah and then I also underwent MMPI as well. Then they said it’s to really rule
out that you have no personality disorder. Now I’m sure that I don’t have bor-
derline or that I don’t… Yeah but that’s actually an exclusionary diagnosis, a
real autism test doesn’t exist, right, I think. That’s more like seeing how you
function memory-wise or how your intelligence functions or your verbal abili-
ties… [Sandra]

The Minnesota Multiphasic Personality Inventory (MMPI) is a ques-

tionnaire that tries to map the personality of the person involved. Sandra
says that this was used to exclude personality disorders such as borderline
during the testing process. She argues that a real ‘autism test’ does not
 THE EXPERIENCE OF BEING TESTED 71

exist, but it is rather a matter of taking a look at how you function and of
excluding other explanatory models. The fact that it is now, via the use of
personality tests, unambiguously determined that she has no personality
disorder, is very important to her. She later explains that in the past, she
was often labelled dependent, attention seeking, perhaps sometimes a bit
egocentric, even though she does not identify with that image at all. The
correct diagnosis, she says, provides her with a correct treatment that feels
good, and that she can identify with.
The idea of ‘diagnoses of exclusion’ also surfaces in other conversa-
tions. Tatiana, for instance, writes about Attention Deficit Hyperactivity
Disorder (ADHD):

You know why they excluded ADHD for me? They gave me Ritalin and checked
if it worked. Well, apparently not. It made me completely hyper. Then you
apparently don’t have ADHD either. I think it’s all pretty vague actually, they
say anthropology is pretty vague, but this is much worse. In anthropology, they at
least admit that they don’t know, and they also always write down why they
think something, they write down their observations. Psychology and psychiatry
are far more arrogant. [Tatiana]

Tatiana, who has a degree in anthropology, has many questions about

the scientific value of psychiatric diagnostics. She, for instance, describes
how no one could give her a satisfying answer to the question how autism
could be distinguished from high sensitivity:

Well there is also something different than autism for people who are spiritually
sensitive, people who are highly sensitive or something. I asked the psychologist
too, but she said: “Yes, but that’s not a disorder.” Well I don’t simply have a
disorder because you want to give me one. I think that trend is still very much
in its infancy, and that psychiatry takes itself so seriously. A few years ago, the
mother was still to blame, when someone was autistic, and then we blamed his
surroundings, every time they think of something new. They could also say: “We
don’t know, but we have come up with this box for these phenomena,” and if it
can be biogenetically, or something, determined, well then they have to put
everyone under a scan. But they don’t even know themselves. Every time when I
ask questions or other autists ask questions, people say: “You’re being difficult,
that’s typically autistic, you guys are so difficult, you’re so precise.” Yeah but
then I say: “YOU are just not thorough. Why don’t you just admit what you
don’t know.” And they so badly want to meet the requirements of biomedical
science, because that’s like rock-hard science, but psychiatry actually really isn’t,
in a way. [Tatiana]
72 K. HENS AND R. LANGENBERG

High Sensitive Person (HSP) is a type of personality that is mainly

described by Elaine Aron. A highly sensitive person is more receptive to
stimuli, which is often connected with getting tired more easily, and a
desire for tranquillity and structure. In relation to these symptoms, it is
unclear, for a few of our participants, how this differs from autism. Tatiana
explains:

They can’t say anything about it [about HSP, KH] because then you don’t
belong in psychiatry. And that’s the inversed interpretation, right. Can you say:
“I don’t know enough about HSP, it could be that you have that as well, but in
psychiatry you are able to acknowledge that you have these things, and maybe
you have that too, but I can’t say anything about that.” But they don’t say that.
[Tatiana]

Tatiana deconstructs her diagnosis of autism: she is diagnosed with

autism and not HSP because the latter is a personality trait and not a dis-
order. And people already presume, instead of testing for a disorder, that
she has a disorder, and that she therefore cannot have HSP. She also very
clearly mentions her discontent with psychiatry and psychology’s desire to
be a biologically ‘founded’, and therefore exact, science. This desire
unequivocally leads to the fact that people do not want to or cannot see
the uncertainties in their own discipline. To Hannah, they explained that
her high sensitivity was connected to her autism: “Yeah, they also say that
I’m a highly sensitive person, which is also connected to that autism.”
Kris also asks similar questions. Although he very much identifies with
the diagnosis of autism, he thinks he has not been given enough informa-
tion about how they were able to deduce that he has autism from the tests.
He has asked for an explanation from the psychologist who tested him,
but he has not received a univocal answer. Why does he have autism, and
not high sensitivity or Obsessive Compulsive Personality Disorder
(OCPD)? “I’m stuck with that feeling like, is that it or not really, or also
highly sensitive, or also obsessive or also this and that…”.
Two of the respondents have, in addition to being diagnosed with
autism, also been diagnosed with a Non-verbal Learning Disorder (NLD).
NLD is characterised by having trouble with spatial awareness, motor
skills, social awareness and insight into cause and effect. There is often a
gap between the verbal and the performal IQ, where the latter is consider-
ably lower than the former. According to some experts, the diagnoses of
NLD and autism (more specifically, the former syndrome of Asperger) are
 THE EXPERIENCE OF BEING TESTED 73

actually the same. As we already know from Chap. 3 (Perspectives on

Suffering), Michael has both diagnoses of ASD and NLD. He explains:

Yeah, when I was young, it always used to be NLD. Now everything is com-
bined: NLD is more a psychologic diagnosis, it’s more neuropsychology, and
ASD has more to do with psychiatry and congenital limitations in the brain.
Now they combine it all. [Michael]

During the interview, Michael indicates that he identifies more with the
diagnosis of NLD than with autism, also because he thinks many people
associate autism with ‘not being social’. He considers himself to be rather
social. He explains that being diagnosed with autism has many conse-
quences with respect to how people around him react. This is especially
problematic when it comes to expectations and the image people have of
autism. As an example, he indicates that when applying for a job, a diag-
nosis of NLD has less of an impact than a diagnosis of autism. With autism
it is as if some doors close, with NLD there is only the need to make a few
amendments.
With Bluetopian, NLD was determined simultaneously with ASD:

I have a second disorder in comorbidity: NLD. Non-verbal Learning Disorder,

which is a bad name (although conventional) and, especially in my case, more
a spatial-visual disorder. So I experience ASD mostly from my NLD. On the
other hand, ASD alone as a diagnosis is more of an exception. ASD almost
always exists in comorbidity with other disorders, problems, psychiatric condi-
tions etc…. [Bluetopian]

Bluetopian can often better relate to the diagnosis of NLD than to the
diagnosis of autism, since this describes both his verbal strengths and his
problems accurately. Here, however, we also encounter the question of
demarcation between diagnoses:

There are different interpretations and opinions about NLD between (neuro)
psychologists and psychiatrists. According to some, NLD is a different name for
ASD. According to others, it is possible that NLD is a diagnosis in itself
(although not recognised by the DSM-5 and therefore not recognised by the offi-
cial institutions). And then there are others who frame NLD within ASD. If
even the specialists don’t agree, how am I supposed to find my way in it?
[Bluetopian]
74 K. HENS AND R. LANGENBERG

Not all interviewees have positive experiences with the diagnostic tests.
Marie writes that she did not think the tests were agreeable at all, she
thought they were strange. This can of course also be explained by her
previous experiences, as illustrated in Chap. 3 (Perspectives on Suffering):

I thought the tests were bizarre and I repeatedly asked myself how they were able
to determine from those results whether someone is autistic or not. I was some-
times bothered by how the questions in the questionnaires were formulated; I
thought some questions were unclear and ambiguous. I also have a tremendous
aversion to questionnaires, ever since my stay in that psychiatric hospital in
2007/2008, because there I had to answer lists with hundreds of questions, but
I nonetheless felt very misunderstood. [Marie]

Vic asks himself how objective a psychiatric diagnosis can be if you are
tested in a facility that is specialised in the diagnosis you are there for:

I ended up in that team, and they’re specialised in autism for adults. In that
sense I don’t know, they must know a lot about it, but I think it’s weird if you go
for an objective diagnosis that you immediately end up in a specific team. [Vic]

Vic wonders how people can come to the right diagnosis if they do not
test the entire person, but start testing someone with a certain diagnosis in
mind already.
Many interviewees received no further explanation about the reason
behind the tests and, therefore, remain in the dark as to whether certain
ambiguities were part of the tests or not. Carl writes about this lack of
explanation:

For two years, six sessions of two and a half hours. And then they presented lots
of things to me: tests, drawing a picture, short questionnaires, but also testing
with figures, so a whole range of tests which sometimes made me wonder like
yeah what’s the meaning of this, and I wasn’t allowed to ask those questions,
and (laughs)… […] I accepted that answer at that moment and said like, I’m
not going to be difficult about it, but I thought like: they will probably give me
an answer afterwards. So yeah, I never got an answer. [Carl]

Michael also thinks it is a pity that he never received further informa-

tion about the tests. In the following quotation, he describes his experi-
ence with the Reading the Mind in Eye test, among other things:
 THE EXPERIENCE OF BEING TESTED 75

And then I did ask after all if I could do the tests again to be able to see again
like yeah, what does this say, and then it will be clear anyway. But sometimes I’ll
also ask: “Can I test someone myself”, because I couldn’t see what those tests
mean or something. You’ve got a lot of feelings that are about the same, how can
you see that in someone’s face, I can tell if someone is angry or sad… but what’s
the difference between … (sighs) yeah sometimes not fearful, angry…,you can
see that, but there is also something … I don’t know, I can’t directly tell but…
and sometimes you can only see a small part of the eyes. And then I think, there’s
so many people who can’t do that. That I sometimes also see like yeah, how much
I scored on that little part, on those parts, because it’s often only scored on
autism. But sometimes I’m like, yeah, how much did I score on a specific part,
and what is most difficult for me in those tests, and what’s easier for me, and
can I then please see those answers, but that never happened. [Michael]

The lack of clarity about the right answers to the test questions gives
the diagnosis a bit of a mysterious character. In the quotation above,
Michael describes that he thinks the eye test is probably also very difficult
for other people.
In the following quotation, Vic reads out an excerpt of the diagnostic
report and describes that he thinks that the explanation of the test is very
cryptic:

“With respect to the autism specific screens, we see that the client scores above the
cut-off on the AQ autism quotient. In terms of self-reported empathy, client is
however still situated within the non-pathological zone…” – does that mean
that I don’t think I’m sick yet? – “Regarding himself, client indicates that he is
still aware of the social cues around him. SRS awareness T=62, but we see
nearly”– and that’s what I’m on about – “but we see nearly perfect ‘ceiling
scores’ on the sub scales that assess his capacities to interpret social signals and to
communicate about them.” What does that really mean, those ‘ceiling scores’
right? So I indicate that I’m still aware of social cues but “we see ceiling scores.”
So that’s actually a bad thing? [Vic]

Vic thinks it is difficult to interpret the diagnostic jargon correctly. He

has questions about the usage of words such as ‘ceiling scores’, and the
difference between what was tested and what he says about himself.
Tatiana describes how the counsellors interpreted what she said differ-
ently from how she actually meant it:

During the examinations at Radboud hospital, they also asked that question
[if she experiences things differently, KH], and I just very calmly responded.
76 K. HENS AND R. LANGENBERG

I said – and I took into account that they would interpret it differently – that
there are of course things you can’t see, or not everyone can see. That’s quite
logical, right, but what they made of it was: “MCDD, she fantasises a lot”….
[Tatiana]

Multiple Complex Developmental Disorder (MCCD) is also called ‘chil-

dren’s borderline’. One of the characteristics of MCCD is confusion
between fantasy and reality. Tatiana, however, interpreted the question as
a factual question about invisible things. She continues:

Tatiana: Of course there are lots of things we don’t see, it has to be, because
otherwise you can’t call to New Zealand on the phone, there
can’t be internet, there are lots of energies, and powers, and, and
in life and the milky way, we can’t see all that.
KH: Does this make you angry?
Tatiana: Well angry, no. But I really thought like don’t see this diag-
nostically when it simply isn’t. So what happened next was
that I thought, you people don’t even know what autism is,
you really don’t know what it is. It’s maybe no autism at all,
there’s also something else, and you don’t want to talk about
that

This causes Tatiana to lose her trust in the medical world, and in the
possibility to scientifically determine diagnoses. Matteo also has doubts
about the decisions that are being made based on diagnostics:

Yes for instance uhm… it says: “the processing of information seems to go in a

very specific way.” But afterwards they explain it as follows: “he seems to process
incoming stimuli in a similar manner and to not make much distinction
between main and side issues.” But I can make a distinction between main and
side issues, but – most of the times, and also in various situations – I try to
always, like, follow one line, to always be myself […].I’m not going to act dif-
ferently when I see someone in the supermarket, because after that I might meet
him somewhere in the woods on vacation or something. I think that’s what they
mean… and that I indeed have problems with that… I have problems with it,
not with making the distinction between main and side issues, but with making
the distinction between encountering someone in a supermarket and encoun-
tering someone in the woods, or for instance meeting that same person in a
course you enrolled in or something… or if he were to enter this room now.
[Matteo]
 THE EXPERIENCE OF BEING TESTED 77

He opposes the clear-cut statement that he would make too little dis-
tinction between main and side issues, but he does think that he has some
difficulty with respect to context sensitivity. For Matteo, these are two
separate issues. For instance, he knows cognitively that it is expected that
you react differently when you see someone on holiday than when you
meet them in the supermarket, but it is difficult for him to put this into
practice.
Some of our respondents received no further explanation alongside
their diagnoses. ASSpirin mentions, for instance, that they sent her diag-
nosis to her via mail. They did give her the opportunity to make a new
appointment. She did not respond to this, however, because the diagnosis
was clear and she did not need any additional information at that time. Els
has a neurological explanation for what autism is:

The psychiatrist said: “every brain develops, but in the development of your
brain there is a deficit. Every baby is born with a lot of synapses and a lot of
connections. Then, that brain develops so these connections are strengthened, but
also that these connections are trimmed and that channels are merged. What’s
left is bigger channels. With you, that’s not the case, those little channels did not
develop into a few big sturdy channels. So with you, all stimuli go through those
many little channels while with others, more stimuli are filtered before they end
up in those large pathways. With you, the filtering still has to be done by the
small channels. This is why you get tired so quickly and why you are overstimu-
lated.” That tiredness is constant in my life. [Els]

It is remarkable how the explanation of what is going on in her brain

can be easily translated to the problems Els experiences in daily life. The
image of the hyperconnected brain is very recognisable for people who
have problems with overstimulation.
In this chapter, we described how our participants experienced the
tests. Many of our respondents have found that the diagnosis holds a ker-
nel of truth, in spite of their often critical attitude towards the tests them-
selves. The degree of recognition that respondents experience in relation
to the content of the tests is often high. The way in which themes are
questioned is very much appreciated by some because of its scientific
value. For others, the connection between the questioning and the con-
clusion is still very unclear. What all respondents have in common is an
awareness that the conclusion ‘autism’ connects with their previous quest.
In the next chapter, we will describe how being diagnosed with autism can
operate as a way to cope with being different.
78 K. HENS AND R. LANGENBERG

Bibliography
Kushner, E.S., K.E. Bodner, and N.J. Minshew. 2009. Local vs. Global Approaches
to Reproducing the Rey Osterrieth Complex Figure by Children, Adolescents,
and Adults with High-Functioning Autism. Autism Research 2 (6): 348–358.
Wiley-Blackwell, December.
Magiati, Iliana. 2016. Assessment in Adulthood. In Handbook of Assessment and
Diagnosis of Autism Spectrum Disorder, ed. Johnny L. Matson, 191–207.
Autism and Child Psychopathology Series. Cham: Springer International
Publishing.
Spek, Annelies. 2017. https://www.anneliesspek.nl/strange-stories/. Accessed
14 Aug 2018.
 CHAPTER 5

Autism as a Way to Hold Your Own

Abstract This chapter deals with the question how one should relate to
the diagnosis once it is made. Is it suddenly an explanation for all the
problems you had in life? Does this mean the quest for recognition is
finally over? Can everything you experience and have experienced now be
explained by turning to the diagnosis? Can the diagnosis help you to think
about your own identity? Many respondents recognise themselves in the
diagnosis, they can relate to what it stands for. In that respect, it gives
them comfort to finally ‘know’ what is ‘wrong’ with them. Some people
ask which parts of their past can be explained by autism, and which parts
are due to other circumstances in life. Others say that autism for them is
normality, but they are aware of the fact that this normality is represented
by a mere minority.

Keywords Autism • Explanation • Recognition • Diagnosis

© The Author(s) 2018 79

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_5
80 K. HENS AND R. LANGENBERG

For the participants, the diagnosis of autism spectrum disorder or

Asperger’s syndrome is a plausible explanation for events and experiences
from the past they could not place. The diagnosis initially has a liberating
effect, which forms a sharp contrast with their often problematic past. It is
usually received with open arms, as a possible explanation for their being
different and their unusual way of responding to people. Because of the
great amount of effort the interviewees put into leading what could in
general terms be considered a regular and normal life, the diagnosis seems
to provide a kind of social refuge from their daily efforts. It provides as it
were a kind of inner peace, next to the continuous anxiety people experi-
ence from being different than others and perceiving and responding dif-
ferently than others do.
 AUTISM AS A WAY TO HOLD YOUR OWN 81

For many, autism is a plausible explanatory model for problems they

have had throughout their lives. At times, it is coupled with a reliving of
similar situations from the past that had unfolded problematically. Because
the diagnosis has provided knowledge about the specific aspects of—for
instance—autism, similar situations are approached with a higher alertness
and more prudence, and are therefore tackled differently. Our respon-
dents testify to profound memories which are connected to these misun-
derstood events, and which they have carried with them for a long time as
moments of failure, or of not responding correctly or adequately. New
information given by the diagnosis provides a different approach to all
those misunderstood moments of the past, which enables the respondents
to process the events. In this respect, the diagnosis can have an exculpat-
ing effect for those who are diagnosed: finally, there is a legitimate reason
for their being ‘different’.
Albert describes in the quotation below that he has had difficulty net-
working his entire life. A few years before the diagnosis, he joined the
Rotary Club—a service club where people go to meet like-minded people
and engage in philanthropy—hoping this would help him move forward a
bit. This was not the case however:

All my life, I have felt I’m not a networker. In order to do something about this,
I joined the Rotary 5 years ago. Now, all those years later, I still can’t network.
Ever since my diagnosis, I understand why. All my life, I have been copying
people’s behaviour so I wouldn’t get noticed too much, and because I can’t think
of how I should behave in certain situations. For instance, I started crying at a
funeral of someone I didn’t know, only because the other people were crying.
[Albert]

Now that he has his diagnosis, Albert understands why he is not able to
spontaneously master the art of networking. He furthermore describes
that he has problems in social situations, and he only manages to remain
standing by copying other people’s behaviour. The diagnosis teaches him
to accept his being different:

I no longer see myself as an alien, but just as someone with a different brain
structure and a different way of thinking. I used to think that there were no
limitations for me. Because of the diagnosis, I got to know my limitations much
better, and also learned to respect them better (through trial and error).
[Albert]
82 K. HENS AND R. LANGENBERG

As Albert indicates, this recognition goes hand in hand with his own
limitations. He used to be convinced that he could handle anything as
long as he tried hard enough, but now he understands that there is a neu-
rological limitation to what he is able to do.
Even though some respondents received different diagnoses before
they were diagnosed with autism—borderline personality disorder, OCD
and so on, they consider autism to be a better explanation for who they are
and the problems they encounter. Vic, for instance, provides a whole list
of diagnoses he received during his several stints in psychiatric hospitals:

I had myself diagnosed or tested towards a diagnosis last year, because I’ve had
so many different diagnoses throughout the years. Yeah it says here (shows diag-
nostic report) uh… autism spectrum disorders, OCD, schizophrenia, schizo-­
affective disorder, schizo-typical personality… Yeah… Two weeks ago someone
said ADHD. With every different psychologist… some can already tell after five
minutes… [Vic]

Vic describes how he did not care much about the diagnoses he received
from the professionals, including the autistic disorder. He did recognise
himself, however, when he read the Wikipedia page about Asperger’s
syndrome:

Yeah but okay, they made me do stuff for a month or so and he eventually said
the DSM-IV classification was… (reads): “autistic disorders, schizo-affective
disorder of the bipolar type, dependency of several…” And then, yeah, problems
within the social area a bit yeah… “Main diagnosis: autistic disorders.” I was
browsing a bit, I was actually looking up what schizo-affective and schizo-­
typical means, and then I eventually ended up with Asperger’s syndrome on
Wikipedia. I’ve not read the entire article, but what I have read is an almost
identical description of my experiences and of my inner self. I mean, I can’t say
it any better myself than how they wrote it there. Having to master social behav-
iours, almost like acting, right. Now, it’s much easier actually, but really as a
child and as a teenager… imitation, memorising things you can say before-
hand, entire conversations in my head: “If he says that, I say this, if he asks
that…” or just completely shutting down and not knowing what I should do. Or
being so upset that your aunt gives you a hand and your uncle a kiss (laughs)
darn… Yeah what else did I read there… performing actions without having
the affect… and then not knowing why, right. I didn’t know anything about it,
right, about that autism, so I think I thought that was a bit strange about
myself. [Vic]
 AUTISM AS A WAY TO HOLD YOUR OWN 83

Decisive points of recognition for Vic are mainly pretending to be dif-

ferent so you do not stand out, and not being socially spontaneous. It is
also remarkable that he identifies more with the description of Asperger’s
syndrome—a diagnosis which, since the DSM-5, is also categorised under
autism spectrum disorder—than with the description of autism.
As mainly discussed by Tatiana in Chap. 4 (The Experience of Being
Tested), some of our participants identified with the description of HSP
before they received their diagnosis. Kris, for instance, describes that his
association with autism only came when the DSM-5 discussed sensory
differences:

Well, I was mostly thinking about high sensitivity, highly sensitive person (HSP),
and high sensation seeker (HSS) also for a bit. Those concepts that were origi-
nally developed by Elaine Aron, amongst others, and now further and differ-
ently developed at universities in our country. Well I was on that track for a
long time, I followed a course about it and I actually started doing that again
since last year, but I still felt like that may also be it, but maybe it isn’t. Anyway,
when I follow a course with other highly sensitive persons in a group, I also feel
like, okay, I’m also regularly overstimulated and understimulated and that’s
definitely there. But in the DSM-5, they now actually explicitly added over and
understimulation to the concept of autism, and that’s what I also really identi-
fied with, by making this explicit in autism diagnostics. Now I do understand
that there is a possible overlap… but for me there’s still a fundamental differ-
ence between HSP/HSS and ASD… [Kris]

Kris recognises a lot of his own experiences in the diagnosis of autism

and was already convinced for a long time that these aspects characterised
him, but he also seriously doubts whether all aspects are applicable to him.
Besides autism, Tatiana has been diagnosed with OCPD. In literature,
this diagnosis is often referred to as ‘comorbid with autism’. From her
quotation below, we can deduce a certain perfectionism, something other
participants also mention:

What more can I tell you about myself? I’m a perfectionist. I also got the diag-
nosis of obsessive compulsive personality. Things are never finished, for instance
a thesis, I can never finish that, it’s never enough. I can also just almost never
start anything because the result will never be good enough. [Tatiana]

In the past, Tatiana was also diagnosed with borderline personality

disorder:
84 K. HENS AND R. LANGENBERG

I had to tell my life story in three sessions. That took the place of the treatments
and I didn’t receive any medication yet. Following the report that girl – it
was really a girl, 24, 25 years old – had made, the psychiatrist decided I had
borderline. And he also hardly looked any further. He said: “I have good news
and I have bad news. The bad news is, you’ve got borderline, and the good
news is, you can do something about it.” Well try to put up with that, right.
[Tatiana]

Tatiana did not agree with this diagnosis however, and because she had
doubts about the expertise of the person who administered the test, she
asked for a second opinion. This resulted in the fact that, besides a diag-
nosis of borderline, they also added depression and OCD to her list of
diagnoses:

Then I went for a second opinion, and I went to the psychiatric ward of the
general hospital. Then they admitted me. They already took questionnaires, also
for ADHD, again the result was borderline, but also obsessive-compulsive disor-
der, recurring depression, dysthymia and dependency disorder. I said, oh, that’s
quite a lot. That they need so many is probably because you don’t have one of
them for the full 100%. And they thought I had ADHD, but ADHD was
impossible because I was so focused as a child. That’s it. And there I was, in
treatment, and I thought it really was very weird. [Tatiana]

Tatiana is very sceptic about the capacity of these tests to give a defini-
tive diagnosis to someone, especially because in her case the different tests
could indicate different diagnoses.
Many participants accept the diagnosis of autism as an adequate expla-
nation for the differences they experience in their lives. Samuel explains:

I think there’s a difference between experiencing differences, and being

acknowledged therein. Experiencing differences is something natural for me,
and it doesn’t have to be negative per se. It’s an instinctive response of people
to react with aversion to what they perceive to be threatening, although I try
to do that as little as possible myself. When your being different, your other-
ness, is acknowledged, and explanations are given for it, when it’s being
labelled, it feels as something positive. People take you seriously, and they make
an effort to understand you. It does take some time until a plausible and
workable explanation is given about the relationship with other people, an
explanation which makes my life better and not just other people’s lives. The
explanation ‘autism’ comes closest to a plausible and workable explanation.
[Samuel]
 AUTISM AS A WAY TO HOLD YOUR OWN 85

For Samuel, the diagnosis is an acknowledgement of a difference that

has always been there. This implies that your being different is explained
and taken seriously. Thus, the diagnosis also has a social aspect, because
the act of determining this being different also leads to the fact that others
will make a bigger effort to try to understand this being different.
Also for BartDelam, the diagnosis was an important turning point that
changed his life for the better. He had already been searching for the cause
of the problems he experienced in how he functioned in daily life, for a
long time. The diagnosis gave him an explanation for his problems, a tool
to understand himself better and a road towards therapy:

The diagnosis was very important for me. I would even dare to say that the
diagnosis has saved my life both qualitatively and quantitatively. When – before
the diagnosis – I dropped out because of a depression caused by exhaustion, I told
the doctor and the relaxation therapist: “something has to happen, or otherwise
something will happen.” I meant that things had to change drastically or I
would die from a heart attack or suicide. There were indeed thoughts of suicide
in order to flee from a life I couldn’t handle anymore. Although I was prepar-
ing a suicide in my head, I was mostly afraid of an impulsive act. While driv-
ing, I often thought: “if I drive against that tree, all my problems will be solved”
and I felt my wheel start pulling to the right. Thankfully, I was always able to
correct myself. Since the diagnosis, everything has changed. For me, the diagno-
sis is a liberation because now I know what the underlying cause is. Although I
had many reservations about the diagnosis in the beginning, it now offers an
explanation for many thoughts and behaviours. It also enables me to under-
stand others better and to reframe difficult situations. [BartDelam]

He continues with the thought that his diagnosis has been liberating:

Since the diagnosis, I can finally really be who I am. I used to think that I was
myself, but that wasn’t true. Unknowingly, I played a role to meet internal and
external expectations. Without even noticing it myself, I wanted to pretend I
was ‘normal’, in other words, be like most other people instead of just being
myself. The concept of ‘just being yourself’ was completely unknown to me before
the diagnosis though, because I didn’t know how to picture that. [BartDelam]

A bit further on, BartDelam describes that the diagnosis provides him
with a perspective on the future:

Before the diagnosis, I also couldn’t even picture the concept of ‘here and now’.
I continuously lived in the past with my thoughts (ruminating what had
86 K. HENS AND R. LANGENBERG

happened) or in the future (preparing for everything that would come). I

have also known beautiful moments, but only since the diagnosis, do I really
know what living in the ‘here and now’ means. I don’t just live in the past or
in the future now, but I have learned to enjoy the things I do now. [BartDelam]

Nora explains that getting in contact with many different people with a
diagnosis made her see her way of being as valuable:

When I heard several (adult) people speak about their diagnosis and their pro-
cess, it struck me how many mutual differences there were. That’s something I
never saw before. Hearing other people’s stories has helped me to understand
what ‘problems’ are, what ‘may be’, what ‘can be’ and what ‘possibilities’ are.
While listening to other stories, I made an important click. [Nora]

A diagnosis offers explanations and also prospects. After years of coping

behaviour and the feeling of constantly having to adapt to others, a diag-
nosis of autism often gives people more freedom to be themselves. People
are permitted to skip office parties, things that used to be major issues
before. Others also seem more understanding. Nora says that the diagno-
sis has changed things in her relationship with her close family members:
“I think it really changed a lot, that they also stopped pushing all the time,
and now it sometimes even comes naturally.” BartDelam describes how
being diagnosed has solved many things in the relationship with his part-
ner. Now, she better understands why he does not always immediately
respond during a conflict.
Sofie has had a very traumatising life. For her, the diagnosis is an answer
to the question whether her problems are due to her past or due to an
innate being different:

Yeah, I actually thought um… it’s going to be a loss situation like um… if I
don’t have it then it’s because of my past, and it’s a loss situation, and if I do
have it, it’s also a loss situation because I, I want to be able to communicate
correctly. But I kind of already gave that up for a bit. I’m like, it will grow,
uhm, but actually getting the diagnosis was a relief. I’m not putting myself
down all the time anymore, yeah and you can’t, and… I don’t blame myself as
much anymore. I want to keep growing, and work on it. It’s not that I give up
like, I’ll never be able to, no I want to be able to, but uhm, if I don’t succeed I
no longer give myself a beating. I’ve actually become more relaxed… [Sofie]

After initially accepting the diagnosis, Marie still has some reservations
and wonders if some things could perhaps be explained by her traumas:
 AUTISM AS A WAY TO HOLD YOUR OWN 87

From the tests and conversations with the test leader, it also became clear that
my life has known quite a few traumatising experiences. I actually never really
gave those experiences a place because I didn’t consider them to be traumas, but
in the end I was actually quite bothered about them… the test leader answered
my question whether she doubted the diagnosis of the multidisciplinary team:
“No, I have no doubts. Although I do wonder how things would look without the
traumas.” [Marie]

This nicely illustrates how on the one hand, a diagnosis at a later age
offers a biological, concrete explanation for problems, but on the other
hand how difficult it is to regard existing problems as purely biological.
Traumas and difficult periods are also an inevitable part of someone’s life,
in how they are processed and in how they can determine someone’s iden-
tity and suffering.
After respondents receive an explanation for certain problems, they also
have to relate to that explanation. Autism is, after all, defined as a disorder,
but one that is quite interwoven with one’s own identity. I am like this,
but it is considered to be a disorder. As mentioned in Chap. 2 (Being
‘Different’), Bas has a clear opinion on the thought-experiment “What if
they would invent an autism pill”:

It can be a thought-experiment. Say, they would invent a pill and if you take it,
you stop being autistic. And I even think they’re already working on something
like that. But I don’t think I would want to take such a pill, for the simple rea-
son that I think this is normal. Maybe I would rather have everyone else take an
autism pill, you see. [Bas]

Bas thinks he is normal, but also says that his normality is a minority. It
would be easier if everyone had autism. He also describes how the prob-
lem not always lies in a certain way of being, but in living together with
people who do not share that way of being. It would be easier if society
would be a bit more sensitive to people who are, for instance, more
stimuli-­sensitive, instead of expecting that these people adapt or get cured:

If we indeed shouldn’t all go to the Highlands or… There are a few other, simi-
lar thought-experiments. Yes I know, pluriform society, it all sounds so nice. But
would it not just be easier if there was a society with only autists, we should dare
to ask ourselves these questions. And yes, instead of that pill, we could also ask
ourselves: can’t we simply diminish the stimuli. So not make me less bothered by
it, but just that there are less stimuli. Less is more, they say. [Bas]
88 K. HENS AND R. LANGENBERG

The Scottish Highlands, with its vastness and tranquillity, might per-
haps be a better place to live than overcrowded Belgium, says Bas.
BartDelam says that the essence of autism lies in the speed of information
processing. The demands of modern-day society are much too high, which
has an impact on his interaction with others, he says:

I think I could be empathetic, I think I could be uhm yeah, assertive or some-

thing, but uhm, it’s still in preparation and I have to, I really need more time
for that. [BartDelam]

Hannah elaborates on the mismatch between accepting yourself and

how difficult it is to not fit in society:

If I could get rid of it, I would. Because I think life is much more difficult if you
have it, yeah… I think life is easier without. Well, this might be very strange
what I’m going to say, but perhaps I’d even rather just, instead of being a chit-
chat person, just not be here at all. Because yeah, I also don’t want to be a chit-
chat person in the sense that I would always only talk about hollow things, but I
do think that life is quite heavy to bear. I very often think, how easy would it be
if I wasn’t here. Not that I, that I now think like, I’m going to hurt myself or
something, no, and I do think that there are a lot of nice moments in life and
all, but I do think it would be a lot easier if I didn’t have to go through all this.
[Hannah]

In a way, Hannah can live with her own way of being and communicat-
ing, but it is very hard for her that the world does not accept this way of
being. Tatiana calls this the McDonaldisation of humans:

Yeah, I think it’s quite an intolerant society. It’s not only very busy and filled
with obligations that people with these ways of being can’t relate to. But also
very intolerant, it is of course a kind of McDonaldisation of humans. It has to
be like that, and everything beyond that is qualified as a disorder. [Tatiana]

Disorder is not so much localised in the fact that you do not function
correctly yourself, but rather in the fact that society makes functioning
differently practically impossible.
A psychiatric diagnosis of autism, often considered a neurobiological
disorder, sometimes has the effect that failure is no longer considered to
be a personal failure or a consequence of not trying hard enough, but
rather an inevitable consequence of having an autistic brain. Our partici-
 AUTISM AS A WAY TO HOLD YOUR OWN 89

pants recount how they became more gentle with themselves after the
diagnosis. ASSpirin, for instance, explains how she considered herself to be
a difficult person for years, but now has an explanation for it:

Up until last year, I was strongly convinced that I was a difficult person. It was
also the message I got as a child at home. Now, I rewind, as it were, all choices
from the perspective of this diagnosis. I actually prefer to have as little people
around me as possible. From that deeper realisation, I redecorated and demar-
cated my life. Now I can clearly see that this has something to do with ASD. And
not so much, as I thought until last year, that I was difficult or antisocial in the
first place, but that there is another fundamental issue at work here. [ASSpirin]

Baukis also describes how she scaled back her perfectionism after the
diagnosis. She describes a childhood, spent in the shadows of her gifted
brother, with demanding parents and where making mistakes was out of
the question:

I really wanted to answer to that perfect model, because I thought that was a
good model. My parents were both very gifted people and good students. When I
got home with a 9 out of 10, I didn’t get a compliment because I did well. No,
they asked me where I made the mistake. Yes, mistakes, that was horrible! I did
tell myself to get a 10/10 as well. A 9/10, everyone at school could say that was
good, but I didn’t think it was good. How does that work? How do you have to
deal with that? I never learned. How can you deal with wanting to be perfect
and not being perfect, how, how? [Baukis]

Throughout her life, Baukis had to face several failures and feelings of
not succeeding. She used to connect this to the eating disorder she had,
but realised that a few aspects of how she (dys)functioned in daily life date
from after her eating disorder:

The explanations for the difficult course my life had taken [polio, eating disor-
der, difficult marriage, difficult divorce, KH] always covered part of the prob-
lem, but never all of it. I never had problems sensing my children, all three of
them have a diagnosis of ASD. With my children, I really, without any ­problems,
sensed the limits: when you can keep pushing, and when you’d better stop. I
thought I recognised that from my experiences with being ‘different’, being
weaker than many peers. That, I experienced during my eating disorder.
Strangely enough, it never occurred to me that I could also have ASD. Until I
saw similarities in the behaviours of my children with my own behaviours after
my eating disorder. [Baukis]
90 K. HENS AND R. LANGENBERG

Els also speaks about the time before and the time after diagnosis.
Before she knew she had autism, she had a big fear of failure, but now,
after the diagnosis, she dares to do a lot more without fear. She says that
because of the diagnosis, she is going through many changes:

I think I will always keep separating my life in before and after the diagnosis. I
think that I may not have changed much, but that I’m still changing. Before the
diagnosis, I used to be very insecure, clearly intelligent, but I didn’t want to
know it myself. I was always afraid of what people might think of me when I did
something. As a child, I was terribly shy but I did blossom, especially when I
started my studies. But insecurity and anxiety have always been there. I first
have to prove myself extremely well before I’m sure it’s okay. [Els]

BartDelam also describes how he became less strict with himself after
the diagnosis:

Sometimes consciously, but mostly unconsciously, I tried to meet the norms,

whatever they may be. Expectations from the outside were unconsciously inter-
nalised, as if they came from within myself. I did set high demands for myself to
meet the norms. This made me to go to extremes all the time, that I had to per-
severe and in doing so, I overstepped my own boundaries. Now, after the diag-
nosis, I no longer feel the need to meet the norm and to fit in. I have been able
to put this aside for the greater part, because I realise that that’s actually not
possible and that I’m different than the others. I still try to do my best, but I no
longer desperately want to be the same as others. Now, they just have to ‘take me
or leave me’. [BartDelam]

Conforming to the norm is no longer necessary, it is simply no longer

possible after the diagnosis. Robyn, who studied physics, explains how the
diagnosis has given her insight into the fact that she has to translate her
experiences to those of others. She used to have many moments where
communicating with her friends and family was difficult, but now she
knows why that is: she thinks differently and has to find a way to translate
two very different ways of thinking, referring, analysing and making con-
nections, into each other:

Yeah, yeah, it feels a bit like you have two reference systems, and coming from
physics, you need a metric to be able to do the translation from here to there, and
now I realise. Like ah, I just need that metric. I used to always think like but
why can’t I, why doesn’t it work for me. But now I realise, I think differently, I
have different parameters I work with. And that makes it much easier. Now it’s
 AUTISM AS A WAY TO HOLD YOUR OWN 91

just like ah yeah, okay, I just have to find a metric in order to be able to com-
municate with that other world, and then it does work. [Robyn]

Some of the participants explain that they had a kind of ‘holiday feeling’
in the period immediately following their diagnosis. Still, ASSpirin and
Albert also remember a feeling of mourning. ASSpirin explains how, for
52 years of her life, she thought she was difficult and antisocial. In those
52 years, she did not have a diagnosis of autism as a legitimate explanation
for her behaviour, which could have made her life easier. Albert refers to
the classic stages of mourning by Kübler-Ross1: things are as they are and
not differently, and he can only accept that now. Hannah, too, recounts a
feeling of loss:

Life has never been easy for me, but I have always had the feeling that it got
better, from kindergarten to elementary school, to middle school, to higher edu-
cation. Starting to work was more difficult. But I have always had the feeling,
gradually my life will get better and, if I just try hard enough, I’ll get there.
You see, it’s getting better and better. And with that diagnosis, I actually got
the confirmation that I’ll never make it. I will never be able to do what someone
else does. When I see my sister-in-law, how she organises her household and then
with children and this and that, and then I think, yeah, I simply can’t do that.
I actually can’t handle that lifestyle, that bustle of our current society. And that
has to do with the fact that there are so many other things that ask a lot of energy
from me, and I think that’s difficult to accept. Because I now have the confir-
mation that I’m different than others and that I’ll not be able to do those
things. Because I have to accept that. While I always used to think, if I just try
hard enough, I’ll make it. [Hannah]

The diagnosis excludes a few possibilities people thought they did have
before. This can be difficult to accept. This is also the reason why Nora
initially resisted the possibility to get tested:

I wasn’t open to the tests. On the one hand, I very much had the feeling that the
diagnosis was already made even before I started with the tests. On the other
hand, when the diagnosis was communicated to me, there was little room for
interpretation, for reflecting on what a label or diagnosis could mean. Apart
from that, I was also very angry because it took something away from me: for
more than 15 years, I had very consciously tried as hard as I could to be like my

1
Elizabeth Kübler-Ross calls these stadia: denial, anger, bargaining, depression and
acceptance.
92 K. HENS AND R. LANGENBERG

brother and sister; to be social, to be a good sister, to be a good child, and so on.
I very strongly felt that when someone gave me a label, it also took the courage
away from me in the sense that they said: “you can try as hard as you want, you
will never be like your brother or sister, because there’s something ‘wrong’ with
you.” In that message, I didn’t only hear that I wasn’t ‘equal to’ and as ‘worthy
as’, but also that all my efforts had been for nothing and that it would be better
for me to stop wanting and trying lots of things. [Nora]

Autism is often described as a neurological disorder you have from the

day you are born, and thus your entire life. Our participants explain how
this knowledge about themselves has made them more gentle, less strict
with themselves, and helped them to better appreciate their own prob-
lems. This does not mean, however, that they fatalistically accept their own
shortcomings. The diagnosis is in most cases a starting point from which
people can better understand and surpass their own shortcomings. Carl
explains that the diagnosis has provided him with the insight that enables
him to take a step back and realise that he sometimes pushes too hard in
conversations:

By doing that myself, by keeping that in mind, by staying alert during conver-
sations or when I recount something, and being aware of ‘this could be a
moment when I start pushing’. Before my diagnosis, I would have thought that
no one listened to me, no one hears me and this is very important, what I’ve got
to say. Now I can take a step back and say: “Oh, it could be that someone else sees
it differently.” [Carl]

Due to the diagnosis, you can see how someone else could perhaps
perceive you, and you can consequently appreciate the perspective of the
other. BartDelam describes how the diagnosis made him understand that
his own perspective might perhaps not always be the right one:

Before the diagnosis, I had a fundamental distrust in people. I also had quite
some prejudices about others, based on my own anxieties. Since the diagnosis, I
know that this is because I don’t understand people very well. Since then, I try
to go introspectively, instead of always thinking the other is the cause of the
problems. Now, I better understand how my way of thinking has influenced my
negative image of others, and I can counter this more quickly from a different
perspective. [BartDelam]

It remains a difficult exercise, however, to see in which areas you can

still improve or surpass yourself, and where you cannot:
 AUTISM AS A WAY TO HOLD YOUR OWN 93

You know Kristien, my life was all about surviving and struggling. Staying
upright and continuing. With willpower and setting goals. Now, I’m really at
a turning point or turning period, the nest is empty, the diagnosis is there,
searching for new goals. Being gentle lies in accepting the good bits and the bits
that are not so good, looking for strengths and living them, and living the things
that are not so strong. Searching for ‘where can I move up, and where not?’
[ASSpirin]

A strong example of the potential of ‘surpassing oneself’ comes from

BartDelam. He has written down a few helping thoughts, which help him
to continue when he is about to get stuck. In the quote below, he describes
how the insight in the thought process of someone with autism—and thus
in his own thought process—teaches him to tackle difficult situations:

During my depression, I followed relaxation therapy. During that therapy, I

had to look for a word or a term that I could use to relax. I chose ‘let go’.
Everything felt like lead on my shoulders and I just wanted so badly to learn to
let go. This method worked so well for me, that I tried the same with different
words and phrases for different situations. And thus a whole list of ‘helping
thoughts’ developed. Helping thoughts are words or short sentences that help me
to skip the usual, extensive and inefficient stream of thoughts, in order to come
to a better decision or result. The thought process of someone with autism is often
compared to a roadmap. With neurotypical people, the thought process goes via
the motorways, which helps people to quickly go from A to B. With autistic peo-
ple, thoughts go via the little roads, including a lot of detours. I still can’t use
the motorways (because of my autism), but with the helping thoughts (sign-
posts), at least I no longer take major detours. For my perfectionism, I for
instance use the helping thought ‘80/20’. This refers to the Pareto principle,
which states that with 20% effort you already reach 80% of the result. In order
to reach perfection, you therefore still need 80% of the total effort. That helping
thought reminds me of the fact that at a certain point, I’m allowed to say that
the result is good, that I can leave it like that and that it’s unreasonable to strive
for perfection. When I now write an email for instance, I don’t have to reread
it four times in order to take out all the spelling and language mistakes.
Rereading the email once is usually sufficiently satisfying already. [BartDelam]

BartDelam put these ‘helping thoughts’ on different slides, and he has

given us permission to publish one of these slides in this book.2 He has
also given us an extensive interpretation of how the helping thoughts
work, as well as a description of some of these thoughts.

2
See Appendix (The Helping Thoughts of BartDelam).
94 K. HENS AND R. LANGENBERG

Our respondents describe how being diagnosed with autism provides

them with an explanation for the problems they have experienced through-
out their lives. Autism is a description of how they function in daily life,
with which they can relate to the other and which they more or less accept.
In a qualitative study by Bargiela and colleagues, we find a description of
14 women—many of them had already received a diagnosis, for instance a
personality disorder, in the past—who were diagnosed with autism when
they were adults. The researchers ascribe this to the fact that women are
better able to hide their autism. They also describe that their participants
often welcome their diagnosis, since the diagnosis enables them to give
their problems a name and to talk about them. This is similar to what our
participants describe.3
The diagnosis of autism often suggests—or is regularly interpreted as
such—that someone with that diagnosis would not be able to logically
think about him or herself. And that everything that they go through
‘happens’ to them and that they are a victim to their circumstances. In the
next chapter, we will demonstrate that this is far more complex and that
there is not a single correct way of thinking. The interviews demonstrate,
after all, that the participants reflect on themselves extensively, and that
they for the most part do not coincide with how they (dys)function.

Bibliography
Bargiela, S., R. Steward, and W. Mandy. 2016. The Experiences of Late-Diagnosed
Women with Autism Spectrum Conditions: An Investigation of the Femail
Autism Phenotype. Journal of Autism and Developmental Disorders 46 (10):
3281–3294.

3
Bargiela, Steward and Mandy (2016).
 CHAPTER 6

The (In)ability to Self-Reflect

Abstract The popular assumption that autistics are supposedly unable to

reflect on themselves is clearly refuted by this book and the testimonies
of the respondents. This chapter focuses on this (in)ability to self-reflect
and shows us how the respondents reflect on themselves, and how varied
and subtle these reflections are. Many of these reflections deal with our
interviewees’ interaction with others, they show us in-depth analyses of
situations and an awareness of their own limitations and how they con-
sciously deal with this. This chapter also addresses the question of lan-
guage and means of expressing oneself and how current reality—also of
psychologists and psychiatrists—is dominated by conventional truths on
communication.

Keywords Autism • Self-consciousness • Reflectivity • Identity •

Language

© The Author(s) 2018 95

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_6
96 K. HENS AND R. LANGENBERG

“Who are you?” is not an easy question to answer. Generally, people

answer this question from the perspective of what they do, wherein they
exist, and in which context they operate. Our respondents also seem to
find this question difficult, but at the same time their answers are so broad
and different that this can at least be called remarkable.
In Autism. Explaining the Enigma, Uta Frith tries to find a theory to
explain autism. This explanatory model states that autistic people have a
deficient self-awareness. With this theory, she wants to explain deficits in
central coherence, executive functions and a deficit in ToM, as well as the
fact that autists often have deviant sensory experiences. She makes a dis-
tinction between being aware of experiences on the one hand, and the
experiences themselves on the other hand. Someone with autism who is
insensitive to pain, supposedly feels this pain, but he is not aware of it.
Conversely, oversensitivity to—for instance—sound is then not explained
by the fact that people perceive a sound louder than it actually is, but
because what people hear is interpreted incorrectly. These conclusions
have caused Frith and Happé to take autobiographies of autistic people
 THE (IN)ABILITY TO SELF-REFLECT 97

with a pinch of salt. The truth(fulness) of their stories should be double

checked with the close circle of friends and acquaintances and/or with
their family members.1 This generated a lot of response. Linda Shriber, for
instance, states that the degree of self-insight of autistic people—despite
the fact that their personality develops differently—does not differ from
the degree of self-insight of neurotypically developed people.2 Victoria
McGreer also argues that people, by writing their autobiographies, actu-
ally want to accomplish that others understand them.3 They want to be
respected as a person. They are not only aware of their own experiences,
but also of the fact that the experiences of others are different.
In this book, we assume that autistic people can very meaningfully
recount their own experiences. It strikes us that they think extensively and
profoundly about what it actually means to be yourself. Some of the inter-
viewees explicitly explain how they search for who they really are.
Moreover, we wonder whether anyone can really be a self-reflective per-
son, whilst thinking about the concept of a unified self. Can you reflect on
yourself at all without verifying this with the other? The philosopher
Wilhelm Dilthey states, for instance, that you cannot know yourself if you
are not confronted with the other.4 Our interviewees, too, discovered they
were different by being confronted with the other, and along the way cre-
ated—through conflicts and confrontations with the other—an image of
what it means to be different. Carl describes how you need someone else
in order to be able to think of yourself:

I think I just have to recognise, or perhaps generalise, that it is very difficult as

a person, to reflect on yourself. That you simply need someone else for that. So
that also means you show yourself with your entire heart and soul. I often
noticed that during an encounter, I have already thought of several different
scenarios, and have already made myself suspicious even before that other even
thought something about me at all. [Carl]

Several people point out that it is difficult for them to talk about them-
selves, or to answer open questions. Although some of the participants
were happy to see the questions beforehand, practically no one found it
problematic to speak about their own experiences. In the following

1
Frith and Happé (1999).
2
Schriber, Robins and Solomon (2014).
3
McGeer (2004).
4
Dilthey (1990).
98 K. HENS AND R. LANGENBERG

­ uotation, Bluetopian manages to describe himself in a few fitting terms,

q
after first hesitating and even conquering an aversion to answering open
questions about himself:

It’s very hard for me to speak about myself in the first person. Not just because I
think it’s hard to use the first person, but because it’s difficult for me to talk
about myself. I have a very strong tendency to start talking more generally,
theoretically, pretty early on in the conversation. It happens more with autists,
that they don’t really like to talk about themselves. In all honesty, I also have to
overcome a certain resistance in order to answer this question. Spontaneously, I
think: why do I have to explain who I am? People will notice who I am. I also
don’t really know who I am. That’s exactly what the problem is. I just don’t like
to talk about myself. I could describe myself as conscientious, a moralist (are
things good or evil, equal opportunities, human rights, animal rights, jus-
tice…), a perfectionist, someone who always thinks (a thinker), someone who
continuously analyses situations and others. [Bluetopian]

Robyn describes her thought process, when she receives an open ques-
tion, as follows:

No, no, no, no, but I’m still thinking, because now you ask, you pose the question
too generally for me. So what happens now in my head is ‘difficult situation,
difficult situation’, and then I go… and you say: “lately”, in my head it goes
like: “lately, okay, that’s about a year, okay, what have been the difficult situa-
tions this year”, okay, then I have to think back, “a year…” And then I start to
scan everything, now… So it’s going to take a lot of time when you ask me a
question like that. [Robyn]

Robyn states that the question “please tell us about a difficult situation
you were involved in” is too open for her. When that happens, her mind
starts to spontaneously envision all possible implications of the question.
What struck us during the conversations is that many of the participants
explicitly and frequently think about their own thought processes, about
the meaning of concepts, about what it means to have certain feelings. In
the next chapter (To Challenge or to Accept), Sofie—who has a 28-year-old
son—explains to us how she thinks about what it really means to care for
someone:

Yes, I regularly think about what it means to care for someone. For instance, my
son got a haircut. I wasn’t present when that happened, he always had long
 THE (IN)ABILITY TO SELF-REFLECT 99

hair, and then I think like – it may be silly right, it’s even the first time I ever
said this – will I still care for him after that? Well, and then I noticed now, car-
ing doesn’t depend on hair, but for me it’s immediately an issue, will I still care
for him, will I recognise him… [Sofie]

This quotation illustrates that Sofie is actively learning from experiences

and that certain incorrect assumptions, for instance, that caring for some-
one would be determined by how someone looks can also be corrected.
People also think about what it means to be a person. In the next quo-
tation, Carl describes his feeling that some days, he is more present than
other days. He also speaks about the fact that when he is very conscious
about not making mistakes, it is quite possible that at that exact moment,
mistakes happen. Carl has, however, also experienced that when he really
concentrates, good things can be achieved as well. The issue for Carl is
that he is not under the impression that he can consciously influence this:

Well, that’s daily business for me. You could say, every day I have to make sure
that I’m present. But you’re not always consciously thinking about that. So, it
can happen because of an agreement, it can happen because of something some-
one says to me which I experience as a confrontation… Well, you could perhaps
compare it to participating in traffic, when you’re not focused on one specific
thing, it works. But if you keep focusing on something specific whilst driving, you
will almost definitely cause an accident. And thus I sometimes have that experi-
ence, that when I’m really concentrating on something, I completely miss the
point. And yet, you can’t put it that strongly, because there are also moments
when I’m focused on something, and someone else will say: “this is genius”, you
see. But I don’t really, uhm, specifically have that distance, these are all coinci-
dences to me. [Carl]

A lot of our participants have created autobiographical writings, which

is of course very interesting. Samuel, for instance, has a popular blog.
BartDelam wrote down his experiences with tests and his own being dif-
ferent in a ring binder with documents. Baukis explains how she kept a
diary ever since she was ten, she is now 60 and the diaries fill the space
below her bed. ASSpirin participates in testimonies about autism. Robyn
is writing a book, and Els is also writing a book in the context of a literary
creation course:

I’m also following a course in literary creation, next year I want to graduate
with a book. And it was initially about the bullying at work I had to deal with.
100 K. HENS AND R. LANGENBERG

I wasn’t the only one who was bullied, it happens more often within the govern-
ment. I talked to someone from HR and he suggested that I would be of help to
many people if I wrote a book about that. But now I also connect that bullying
to my autism, I was an easy target because of my vulnerability. [Els]

Els started writing this book before being diagnosed with autism, and
initially wanted to write it about the bullying she experienced at work.
Now, having the diagnosis has brought her so much clarity that this will
probably become an important subject of her book.
Samuel writes about why autistic people feel such a need to share their
experiences in a book:

I think that writing is a way of taking something out of your head – a bit like
software programs do with junk files – also a bit of going public, a bit of like
developing a custom-made social prothesis and also a bit of making concrete
what you have done. [Samuel]

The idea of writing as social prothesis is elaborated on by Leni van

Goidsenhoven and Anneleen Masschelein, in the context of their article
on an autobiographical blog about autism. They describe how writing can
help you build a bridge with the outside world.5 In other articles, van
Goidsenhoven explains that writing an autobiography is a way to escape
the restraints of a diagnostic label.6 By writing about yourself and sharing
your experiences with your diagnosis with others, you can work with the
limitations and boundaries of the category, and integrate that category
with other labels or identities (brother, author, wife…).7
Robyn describes, in a very gripping way, that it is very hard for her to
understand feelings:

That, that we can’t understand how your world is, your emotional world. And
that feelings are very incomprehensible for us anyway. That we can’t fathom
that. Feelings are like animals in the zoo: you people can say “that’s a zebra”,
and describe it. For us, emotions are something like, yeah, that’s an animal, but
we don’t really see what you see. We see animals… And you can say: “yeah but
that’s fear and that’s sorrow and that’s panic”, but for me it’s all exactly the
same. If I then feel fear, my psychologist says: “you look afraid.” And then I
think, do I look afraid? So, is this fear? Yeah… [Robyn]

5
Masschelein and Van Goidsenhoven. Posting Autism. (2016a).
6
Van Goidsenhoven (2017).
7
Masschelein and Van Goidsenhoven. Donna Williams’ Triumph. (2016b).
 THE (IN)ABILITY TO SELF-REFLECT 101

The feeling Robyn describes here, corresponds with what psychologists

call alexithymia: not being able to determine feelings. She does give a very
accurate description of what that means to her. Through reflecting on the
problems she has with feelings, Robyn reaches a very clear insight about
what it means to have these problems.
In the video In My Language (2007) Amanda Baggs strikingly depicts
that linguistic communication is not the only way one can relate to reality.8
Baggs is diagnosed with ‘low functioning autism’ because she does not use
oral language. With this clip, she questions what it means to be low func-
tioning. She shows her own language: a more direct way to handle reality,
by humming and feeling. Her way of communicating is not inferior, but is
different. It is a frequently heard expression that humans are linguistic
beings. Usually, we automatically think about the spoken word. But why
would other ways of expressing not be just as good? A few participants
indicated that they (also) feel comfortable with other ways of expressing
themselves. Nora explains that she perceives many things visually, and that
she spoke to someone else diagnosed with autism, using little cards with
names written on them:

He actually wanted to explain ‘relations’ to me; relations between him and me,
and more specifically how he felt emotionally towards me. He did that with the
help of self-made cards. On each card, there was an emotion written down.
There were about 9 cards on the table in a specific constellation which portrayed
how he thought about a ‘friendship’. Then he started to rearrange the cards to
explain how everything evolved between him and me. It was his way of saying to
me that he had fallen in love and that it became difficult to keep that other –
friendly – relationship. The feeling, and more importantly, the extreme clarity
of what was being said whilst rearranging – the different moves that were pos-
sible – from and between these cards, I will never forget that. Rarely have
changes, mutual relations and relationships been communicated so precisely
and so clearly that they started to make sense and mean something. [Nora]

Nora experiences communicating with each other by way of little cards

and images to be much more expressive than the spoken word. Nora very
much likes to dance, and even considered becoming a professional dancer,
until she fell into a depression after her studies. She also explains that she
does not like to be in the spotlight—an inherent problem to be able to

8
https://www.youtube.com/watch?v=JnylM1h2jc
102 K. HENS AND R. LANGENBERG

practise this profession. Dancing—without pressure—is still an important

way to express herself however. Nora calls this “one of the most blissful
moments.”
Bas has also experienced that therapists do not completely consider dif-
ferent ways of expressing to be as valuable as communicating through
language. Bas is a musician, he has been making music ever since he was a
child and he only plays his own creations. He also ran a music store for a
while. For him, music is a natural form of expression. Although he expected
that he would be diagnosed with autism, he has problems with the diag-
nostic report:

I didn’t have problems with the fact that the autism was confirmed. I was actu-
ally happy with that, because it corresponded with my expectations. If they
would have said: “No, you don’t have autism, but you do have schizophrenia”,
that would have been very difficult for me of course. But I was very critical of
the report they wrote. There were things in it of which I thought, how is it even
possible that you write this when you have examined me for a year. After every-
thing I told them, the report for instance said: “the patient – you’re a patient
all of a sudden as well – has very limited inner experiences.” So you read that,
and I also went back and said: “I don’t mind if you say something like: patient
finds it very hard to express his inner experiences in Dutch.” I don’t mind that
at all, but the reality is exactly that these inner experiences are actually so rich
that you can’t just simply start explaining it in Dutch. Music is for instance
actually also a language, a language wherein I can let these experiences out
much more easily. A language which is even formed by doing it, because in a
spoken language you can still think, first the message, and then you use the lan-
guage to transfer that message. But with music, the medium is the message
itself. The meaning comes into being, only by doing it. [Bas]

During the diagnostic process, Bas had asked if he could express his
feelings through music instead of language. They refused. For the diag-
nostic, someone’s inability to express their inner experiences in language
is the proof of a lack of these experiences. For Bas, however, spoken lan-
guage is insufficient to express his experiences. In the last sentence of the
quotation above, Bas furthermore questions if inner experiences can exist
at all, separately from its communication.
Our participants specifically choose not to ignore the question of who
they are. Moreover, this question explicitly confronts them with ­everything
they have already experienced throughout their lives. With this in mind,
we have to conclude, along with our respondents, that the assumption
 THE (IN)ABILITY TO SELF-REFLECT 103

that people with a diagnosis would be unable to think about themselves,

is incorrect. It is true, however, that our interviewees indicate that there
are different forms of meaningful communication and that for them a
discomfort with spoken language does not automatically imply that peo-
ple are unable to communicate. Good examples hereof are the drawings in
this book that precede each chapter. What is expressed in these drawings
is of equal importance as the written text; reading or understanding what
it means, however, cannot be done in a literal way. In these unconven-
tional ways of communicating, ‘the other’ has to make an extra effort to
understand the communicator, whereas usually, it is exactly the other way
around for people with a diagnosis. In the next chapter, we will focus spe-
cifically on the image of autism that is established in society at large, and
how our respondents are confronted with that image and the fact that
they, as a person, never completely coincide with their diagnosis.

Bibliography
Dilthey, Wilhelm. 1990. Ideen Über Eine Beschreibende Und Zergliedernde
Psychologie (1894). In: Die Geistige Welt, 139–240. Gesammelte Schriften,
Vol. 5. Vandenhoeck & Ruprecht.
Frith, U., and F. Happé. 1999. Theory of Mind and Self-Consciousness: What Is
It Like to Be Autistic? Mind and Language 14 (1): 1–22. Wiley.
Masschelein, Anneleen, and Leni Van Goidsenhoven. 2016a. Posting Autism.
Online Self-Representation Strategies in Tistje, a Flemish Blog on ‘Living on
the Spectrum From the Front Row’. In Disability and Social Media: Global
Perspectives, ed. M. Kent and K. Ellis. London & New York: Ashgate.
———. 2016b. Donna Williams’s ‘Triumph’: Looking for ‘the Place in the
Middle’ at Jessica Kingsley Publishers. Life Writing 13 (2): 1–23. Taylor &
Francis.
McGeer, Victoria. 2004. Autistic Self-Awareness: Comment. Philosophy, Psychiatry,
and Psychology. Special Issue 11 (3): 235–251. Johns Hopkins University Press.
Schriber, Roberta A., Richard W. Robins, and Marjorie Solomon. 2014. Personality
and Self-Insight in Individuals with Autism Spectrum Disorder. Journal of
Personality and Social Psychology 106 (1): 112–130. American Psychological
Association.
Van Goidsenhoven, Leni. 2017. How to Think About ‘Autie-Biographies’? Life
Writing Genres and Strategies from an Autistic Perspective. Language,
Literature and Culture 64 (2): 1–17.
 CHAPTER 7

To Challenge or to Accept

Abstract Our participants express an inherent ambiguity with respect to

the diagnosis of autism. On the one hand, it offers an explanation and a
possible way out of the existing problems. On the other hand, it is impos-
sible to completely coincide with a phenomenon that is as heterogeneous
as autism. The danger exists that you will regard yourself solely as defined
by the diagnostic label. Is it true that ‘accepting’ the diagnosis means that
you accept a disorder which, according to certain interpretations, is a life
sentence? The distinction that originates in formulating and discovering
‘being different’ is therefore of vital importance, more than ‘being autist’.

Keywords Autism • Diagnosis • Label • Acceptance • Challenges

© The Author(s) 2018 105

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_7
106 K. HENS AND R. LANGENBERG

Although the diagnosis initially comes as a relief, people diagnosed with

autism will eventually start looking for ways to relate to this diagnosis.
After all, the concept of autism carries many connotations which are too
numerous and diverse to be applicable to a single person. In an analysis of
conversations with parents of children with a diagnosis, Jessica Lester elab-
orates on how broad the concept of autism is, and that people to a certain
extent also ascribe their own meaning to it:

Parents, practitioners and society, then, by orienting to autism as having shift-

ing meanings, might avoid constructing fixed and stable identities for and
with those with whom they work and interact, inviting parents and individuals
with autism labels themselves to offer accounts that function to shape and
reshape their social realities.1

Jennifer Singh also describes—on the basis of an interview study—how

much ‘work’ parents have to do after the diagnosis in order to internalise

1
Lester (2012).
 TO CHALLENGE OR TO ACCEPT 107

the diagnosis of their child.2 This shows us that autism is not at all conclu-
sive as an explanation in itself: people more or less recognise their child in
certain characteristics and connotations. In this chapter, we assess to what
extent this also applies to adults. Do they also have to internalise the
diagnosis?
After the diagnosis, many of the interviewees read books and searched
for information about autism. Els, for instance, explains that books and
lectures are very useful to her. Sofie is also still reading up on autism.
Being diagnosed with autism implies that there is a disorder, and that the
diagnosed are entitled to adjustments at work and/or sick leave. Vic
explains that he qualifies as disabled, but asks himself why he is disabled:

I’m disabled, but… I do have the limitations, right. For instance, what bothers
me most, apart from the depressive moods, is agoraphobia. I can’t freely move
like any other person. But apart from that I really feel… I wonder why I’m
disabled. Especially when I’m not challenged… I think I used to be confronted
with difficult situations more often, or ran into things which caused me to show
symptoms. But now I have arranged my life in such a way that that hardly ever
happens. Unless it takes me by surprise. For instance, when someone calls me
and says: “come, let’s get in the car and drive there because there’s a party going
on.” Then I’m like, no way right. [Vic]

Vic says he only feels disabled in certain situations. Now that he has a
peaceful life with a certain structure, and he no longer has to go outside,
he does not feel bad. The aspect of disability only comes to the fore when
unforeseen circumstances invade his life.
An existing cliché is that autistic people are automatically good at ICT
and should therefore simply find a job in the computer industry. Vic, and
also Hannah, disprove this. Vic says he is not good with computers at all,
and Hannah thinks the omnipresence of screens in society is disturbing.
It is remarkable that a large number of participants have jobs that one
would not initially associate with autism. One participant is a doctor,
another previously owned a catering business at the coast, and there is
even a mystery shopper amongst them. Several participants are teachers.
Baukis explains:

At first, teaching would appear contradictory for someone with autism. But it
actually isn’t, because when you teach, you’re in charge, you’ve got p­ redictability.

2
Singh (2016).
108 K. HENS AND R. LANGENBERG

Following a course, or sitting in a classroom where everyone has to listen and be

silent, fine. But with group work, when I don’t know what’s going to happen,
terrible. I nearly die. [Baukis]

Teaching is, according to Baukis, on the one hand contradictory for

someone with autism, perhaps because it is stressful and it instantly brings
the person into contact with a group that consists of several people. On
the other hand, the love for teaching can be very well explained by the fact
that the teacher has the power to impose his own structure.
Bas expresses his desire to keep his uniqueness as follows:

I think many other people could be more easily identified than me, with only a
few labels, and I really think that it’s more difficult for me to answer that
question,3 just because I’m not as uncomplicated as that. [Bas]

Nora has problems with how the diagnostic study was performed on
her sister, because her sister very much identified with her label, and also
started to re-interpret her past solely from the perspective of the
diagnosis:

Although I’m very different from my sister character-wise, I know that this does
not automatically mean that she can’t get the diagnosis of autism spectrum
disorder. Well, she was diagnosed with it, very recently. She became very unstable
because of the diagnosis, she started to re-interpret her entire past and com-
pletely lost her identity. In the end, a second opinion completely refuted the first
and there was no mention of autism, but of something completely different
which also required a completely different approach. On top of that, she really
needed therapy to help her deal with stuff. It wasn’t something of a ‘lasting
nature’, but an ‘occasional problem’, irrespective of how long it drags on. For
me, this was a very important event in the sense that I have a lot of questions
about diagnostic processes. The diagnosis has helped me, and I’m not against
diagnoses, but at the same time I have a lot of questions about certain processes,
with its transparency, the scientific authority and the conclusions that are some-
times too easily made. [Nora]

The explanatory value given to a diagnosis of autism runs the risk of

interpreting every aspect of your personality and actions according to that
‘truth’. It can, however, also just be an explanation that offers some peace.
Carl explains how difficult it is to find the right balance between the two:

3
“Please tell us something about yourself. How would you describe yourself?”
 TO CHALLENGE OR TO ACCEPT 109

I mean, imagine you say like yeah if that happens I will react like this. First of
all, that’s simply not true, because every event is different. But you could say,
perhaps there is a tendency to react that way, that may be possible. That can help
me orientate, to say like, I must be careful of that. Okay. But, if I do that too
strongly, I become an oddball, so you can’t continue with that either. You see? So
the aspect of having a diagnosis, and being considered strange, no one wants
that, I think. But the aspect of, okay, I know that I have to be wary of certain
things, but also not too strongly… yeah that can help sometimes… [Carl]

Rather than explaining his actions in deterministic terms, Carl describes

the diagnosis as a way to orientate yourself, to become aware of potential
challenges that could occur.
The idea of autism is associated with a couple of traits that participants
usually do not identify with. A frequently heard cliché about autistic peo-
ple is that they are not social or supposedly lack empathy. In the following
quotation, Sandra challenges this assumption. She explains that she feels
that not meeting the social norm entails that people automatically think
you are simply not social. Sandra would explain it differently:

I’m described as someone who’s not social. But for me, being social has got some-
thing to do with being open to other people, and letting other people be who they
are and helping them. That’s being social for me, that you care if someone has a
problem or something, that’s being social. But for many people, I think, being
social is going somewhere together, sharing something together, having the same
opinion together, having many people around you and throwing lots of parties,
these kinds of things. For me, that has nothing to do with being social. [Sandra]

For Sandra, being social clearly does not mean looking for social con-
tacts, but rather letting people be who they are, as she indicates at several
moments during the conversation. In that respect, she even considers her-
self to be more social than other people. Michael, too, who has a side job
as a mystery shopper, contests the assumption that autistic people could
never be social, that they have no friends or have problems addressing
other people:

But I dare to address people perfectly, I mean I also go to these shops, I also speak
to these people, I also go to BMW for a sales talk. I totally don’t mind. I also have
friends, so – okay… I also like working on my computer but I’m not like only
sitting behind a computer and never speaking to people or something. I also use
Facebook, right, so… Yeah okay there are also people with ASD who don’t use
that or something… [Michael]
110 K. HENS AND R. LANGENBERG

One of the most well-known explanations for the social problems autis-
tic people experience is that they have a deficient ToM. Autistic people
supposedly have problems understanding the other, or at least, this is gen-
erally assumed. Various respondents indicate, however, that understand-
ing another person is possible, but that it sometimes just does not happen
naturally. It can take more time and it sometimes even requires a transla-
tion in order to enable both parties to understand the different thinking
patterns. The testimonies of the interviewees about their continuing
search in the world around them, can lead to a more gentle point of view
than, for instance, Simon Baron-Cohen has in his book Mindblindness. He
affirms the observed inability of autistic people to imagine what goes on in
someone else’s mind. Baron-Cohen bases this on the distinction between
empathising and systematising, wherein his research data indicate that the
ability to systematise is overdeveloped in people with a diagnosis of
autism.4 Some of our participants, however, are clearly very occupied with
trying to figure out what the other person thinks and feels. Hence, it
would be interesting to further examine to what extent it may—for some
people with a diagnosis of autism—not be a matter of inability, but rather
a matter of a differently managed ability to know what goes on in someone
else’s mind.
Other explanatory models of autism are also challenged. Bas, for
instance, states that the focus on detail (weak central coherence theory) is a
matter of perspective. In the next quotation, he refers to his experience
that others, after visiting a concert, do not seem to have noticed certain
issues:

And yeah, in NT [neurotypical, KH] language, people say that ‘the autist is
focused on detail’. For instance, that music, there, that note played in that way.
And then I wonder: what’s detail oriented about that? Isn’t it just simply the
heart of the matter? I should say exactly the opposite: if there were a minority of
neurotypicals, what’s typical about neurotypicals? That they focus on details, on
the bar of a concert hall for instance. So I could actually say the same about
them. [Bas]

Bas gives an example of the concept of context blindness, which is often

associated with autism, and says that it is a matter of perspective. He has
problems with the fact that when he goes to the pharmacist, they ask him

4
Baron-Cohen (1997).
 TO CHALLENGE OR TO ACCEPT 111

if everything is okay. This question is absurd. No one is—so he says—ever

completely okay. Furthermore, the fact that you are at the pharmacist,
suggests precisely that everything is not okay. Moreover, Bas later clarifies,
he does not go to the pharmacist as a context to engage in broad and deep
personal conversations but to buy medication. Who is context blind then?
People—and specifically women—who were diagnosed at a later age,
were for a long time able to conceal their autism by exhibiting socially
desirable behaviour. With a few of the participants, this brought about
questions about who they really are. Marie describes how she, when she
was just diagnosed, could totally relate. It is for her “an explanation for
weird traits, an overflowing and chaotic brain and a life wherein everything
is complicated and difficult…” The diagnosis enables her to be more gen-
tle to herself. With time, the doubts start to grow however: “… is the
diagnosis correct, and if it is, I now know that what’s wrong with me will
always stay that way...” Marie describes how she mourns the fact that cer-
tain things will remain difficult. She has a great interest in other countries
and cultures, but also an aversion to changes of scenery, which seriously
complicates travelling for her. The diagnosis tells her that she will never be
able to change this aspect of her personality. She also asks herself questions
about her own identity. The diagnosis teaches her, namely, that adults, and
mostly women, have learned to camouflage their issues and their identity:

On top of that, I ask myself even more than before WHO I am. Because if the
diagnosis is correct, and I have been compensating, concealing and imitating
behaviour my entire life: then who am I really? A collection of behaviours and
attitudes that are a copy of others? I’ve quite the tendency to take over people’s
moods: what does that mean and why do I do that? Because I otherwise don’t
know how to behave? Because I’m oversensitive? What good is it to a sad friend
that I also become sad……..? (I’m actually really bad at comforting) [Marie]

Marie describes here, that if the diagnosis is correct and she really is
autistic, that she has been able to cover that up her entire life. She also asks
herself how she can still know herself. Kris has a similar observation:

Yeah, I keep having these questions: “who am I”, right? I also met several autis-
tic people who told me how they also worked with many adaptation strategies
and adapt themselves a lot. That’s something I really recognise. I actually really
don’t know who I am. I have always lived according to other people’s expecta-
tions, according to what I thought the situation demanded. According to what
they expected from me at school or at work, but I actually don’t know who I am.
[Kris]
112 K. HENS AND R. LANGENBERG

After a long period of suffering and adaptive behaviour, the diagnosis

produces information to, again, start searching for who one really is. Els
describes this feeling as if she has to rediscover herself:

Now, I just have to try to follow my feelings, I just have to try to reach that feel-
ing. I’ve never done that in my life, and I am faced with very strange situa-
tions, strange questions: “Who am I then?” Actually, I don’t know yet. [Els]

In the quotation below, Sandra clearly tries to understand who she is in

relation to the diagnosis:

In the beginning, it was a relief, you’ve got clarity after all. But I still haven’t
completely accepted it I think. I don’t think that I will ever accept it but yeah,
it’s hard sometimes… It also depends on who you tell, right, not everyone under-
stands to be honest. I also don’t want to abuse the diagnosis or not even use it at
all. But that diagnosis is important for me, for me as well as for the children
actually. Not as a kind of excuse, but rather to get the assistance you are entitled
to. That’s what you need it for. However bad that is, but that’s how it is, other-
wise you’re not entitled to home-based counselling. But as a person, I haven’t
changed, while I have noticed that once people – also people who know me very
well – knew of the diagnosis, I was different to them. That I was different all of
a sudden. Even though I have actually always been like that. I have always been
confronted with these problems. But of course, from the moment you have that
diagnosis, you have to deal with these prejudices. [Sandra]

Throughout the entire conversation, Sandra emphasises that she is still

the same person, that the diagnosis has not changed anything about that.
The only difference is that her way of being has a name now. What has
changed, is how people relate to her now. At another moment during the
conversation, Sandra states that she is not only autistic, but that she is
Sandra, a unique person whose autism is only one side of her.
In Chap. 5 (Autism as a Way to Hold Your Own), we have explained
how a diagnosis can relieve feelings of guilt. The realisation that your
shortcomings are due to a neurological ‘being different’ allows you to let
go of certain issues. Does this mean, however, that you are from now on
completely irresponsible for your actions? Baukis explains that even a diag-
nosis does not relieve you from being responsible for yourself. Here, she
refers to raising her three sons. She has always given them the message that
a diagnostic label is not something you can hide behind:
 TO CHALLENGE OR TO ACCEPT 113

When you have an impairment (such as ASD for instance), this impairs what
you can handle. The fact that you can’t overstep your limits, is something no one
can hold against you. Nevertheless, an impairment doesn’t relieve you from the
moral obligation to make the most of yourself. You don’t have to do more, but
you also shouldn’t do less. You owe it to yourself and to the world. What you do
with your life, within the limits of your possibilities, remains your own responsi-
bility. You can demand your rights, but you will also still have obligations.
Raising children means that you teach them that they have to take more and
more responsibility for their own existence, and from your side as a parent it
means that you have to grant your children more and more rights. [Baukis]

We have mentioned a few times before that ASSpirin describes how she
was convinced that she was difficult and antisocial before the diagnosis,
and how people understand her more after the diagnosis. Still, this does
not mean that now, she supposedly no longer has a choice, she writes:

But it remains a question of being and choice. The fact that there is a diagnosis
doesn’t mean that the choice is eliminated. No excuses, but interpretation.
[ASSpirin]

Does having a neurologically different brain mean that you are differ-
ent or less responsible? In the quotation below, Tatiana describes how she
questions the ‘rock hard biological’ aspect of autism. ‘Biological’ after all
implies that it is hard to surpass, that it is rock hard. For herself, it remains
a story however:

They no longer think vaccination could be a cause, but the idea that you can get
it from something, for instance, from smoking, an older father, genetically in
the family, that’s logical of course, but I just think it’s very difficult. I thought
borderline was difficult, but that’s psychology, that’s just vague, but now they
want to, they want to prove it genetically, biomedically. And then it becomes
rock hard, and then it also is rock hard. And I think that’s stupid. And because
I don’t know what it actually is, I also can’t talk about it with other people.
Because if they say what it is then, I first think to myself, it’s just a story. Actually,
I feel that from that moment, I’m telling a zero story. [Tatiana]

Kris also experiences a certain discomfort with the vagueness of autism.

How does such a general label relate to your own personality? ‘Everyone
is different’, but there has to be a common element if we want to make a
diagnosis:
114 K. HENS AND R. LANGENBERG

I think it’s all very fascinating, but it remains something very diverse and
complex, everything that’s involved with autism. Everyone is different and we
all vary, also within autism. It’s a spectrum, but that also makes it so difficult
for me to actually capture like yeah, what is it actually. Because in order to give
the definition, in order to be able to diagnose, there must be common elements,
right. [Kris]

Carl doubts whether children who have not yet had to deal with a
couple of obstacles should be diagnosed. After all, will they then not sim-
ply be regarded as a certain kind of person, which has quite a few conse-
quences for their upbringing, treatment plans and special schooling.
Should they not be regarded as a unique person? An adult is probably
better able to handle this tension:

No, I don’t think so, I think that, I’m really not sure about that. I think we do
a better job by recognising the unicity of all human beings, and dealing with
that, rather than sticking explanatory models or diagnoses onto it. It is true
though, that these, these elements can help as thinking methods. But you have to
let them go just as easily as you adopt them. [Carl]

Tatiana also has her doubts about the early diagnosis of children because
diagnostic labels are too deterministic. Is it a good idea to tie children
down to something, so early on? She explains that she is better able to
assess the implications of the diagnosis than others… “because luckily, I’m
just fifty, when I heard it, so I’m already pretty strong, but if I’d been
twelve, it would have been a bit dangerous.” Nora also suspects that there
is a danger in early diagnoses:

A diagnosis can certainly help, but what can be dangerous, is that afterward, it’s
more difficult to think beyond a diagnosis. Not just the person itself, but also the
people around this person should from time to time get the opportunity to move
past it. Not to deny it, on the contrary, but moving past the formatting of a cat-
egory, moving past it and being able to do your own thing with certain mapped
out roads so that everyone can be just as entitled to doubts and risks. [Nora]

With an early diagnosis, so she says, there is the danger that children are
no longer challenged to surpass themselves, and are brought up based on
certain prescribed formulas that are available for a certain diagnosis.
BartDelam describes then that he would like to have his 15-year-old
son tested as well. He recognises a lot of his own traits in him and regrets
it very much that his autism was determined at such a late age:
 TO CHALLENGE OR TO ACCEPT 115

I would like to have my son tested for autism as well because I recognise a lot of
my traits in him. My therapist discourages this as long as my son does not display
any problems. He is indeed doing well at school, not bullied, and there appear
to be no other problems, but it is practically impossible to know what really goes
on in his mind. He is very closed off and withdrawn. I hope he is not going down
the same road as I did, where he first has to overstep his limits for years to eventu-
ally end up in a severe depression caused by exhaustion, before people consider a
diagnosis. With a timely diagnosis, we could save him from a lot of trouble.
[BartDelam]

Our participants express an inherent ambiguity with respect to the

diagnosis of autism. On the one hand, it offers an explanation and a pos-
sible way out of the existing problems. On the other hand, it is impossible
to completely coincide with a phenomenon that is as heterogeneous as
autism. The danger exists that you will regard yourself as defined solely by
the diagnostic label. Not knowing can however sometimes result in
unbearable suffering, which might have been prevented. Huws and Jones,
who interviewed nine young people between 16 and 21 years old, also
describe how a diagnosis can increase the self-esteem of the diagnosed
person. Furthermore, a few of these people describe how their diagnosis
decreased harassments, although some of them also explained that they
were bullied precisely because of their diagnosis. The diagnosis has caused
a disruption in the plans they made for themselves and their future, but
has also offered an insight into new possibilities.5
It may be an odd principle, that we would write about accepting or not
accepting a diagnosis that can clearly be determined and discerned. Still,
our respondents sometimes doubt, criticise, are suspicious, besides also
being respectful and appreciative of the diagnostic process. In that sense,
it is clear that people have to accept that there is some truth to what was
determined in the diagnostic process. Is it true that ‘accepting’ the diag-
nosis means that you accept a disorder which, according to certain inter-
pretations, is a life sentence? The renewed engaging in new and further
developments and learning from new experiences would then be almost
futile, because it would eliminate autism. Meanings, mindsets, expecta-
tions about autism sometimes appear to be fixed and imposed by the
immediate surroundings. This can stem from well-intended precaution,
but also from incomprehension and inconvenience. The distinction that
originates in formulating and discovering being different is therefore of

5
Huws and Jones (2008).
116 K. HENS AND R. LANGENBERG

vital importance, more than ‘being autist’. Trying to put into words who
you perceive yourself to be as a human being, also interpersonally, is not
always easy. The amount of misconceptions and misunderstanding that
the people you hold most dear can show can indeed start to dominate
your own experience of who you are. In spite of the daily problems, many
of our participants intuitively choose for the unknown and the full breadth
of the developmental opportunities that keep emerging. It is often the
setbacks, the obstacles, the challenges and the necessity to express oneself
in conflict that lead(s) to learning. You can, for instance, learn who you are
and how you can or should relate to the other. In Chap. 8 (Perspectives on
the Future), we will further explore how our participants regard their lives
after and with the diagnosis. How will they deal with feelings of accep-
tance and resistance toward this being different, while at the same time
dealing with the sometimes disqualifying aspect of the diagnosis? How do
they think about (health)care options?

Bibliography
Baron-Cohen, Simon. 1997. Mindblindness: An Essay on Autism and Theory of
Mind. Cambridge, MA: MIT Press.
Huws, J.C., and R.S.P. Jones. 2008. Diagnosis, Disclosure, and Having Autism:
An Interpretative Phenomenological Analysis of the Perceptions of Young
People with Autism. Journal of Intellectual & Developmental Disability 33 (2):
99–107. Informa.
Lester, Jessica. 2012. A Discourse Analysis of Parents’ Talk Around Their
Children’s Autism Labels. Disability Studies Quarterly 32 (4). The Ohio State
University Libraries. http://dsq-sds.org/article/view/1744/3176.
Singh, Jennifer S. 2016. Parenting Work and Autism Trajectories of Care. Sociology
of Health & Illness 38 (7): 1106–1120. Wiley.
 CHAPTER 8

Perspectives on the Future

Abstract This chapter explores the perspectives people have on a future

living with a diagnosis. A diagnosis implies a ‘dysfunctioning’, a label, a
deficit, an ‘abnormality’. How to think about the balance between finding
recognition in the diagnosis on the one hand, but having to deal with the
stigma society connects to the diagnosis on the other hand? Should you
tell people or not? Do people still take you seriously after you tell them?
Telling, for instance, your boss about your diagnosis can mean you receive
some helpful benefits, but it can also lead to the fact that you are deemed
unfit to perform certain tasks you consider yourself perfectly fit to per-
form. This chapter also deals with how society sometimes tends to patro-
nise people with a diagnosis, while this is certainly not what they ask for.

Keywords Autism • Future • Employment • Relationships

© The Author(s) 2018 117

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_8
118 K. HENS AND R. LANGENBERG

A diagnosis of autism can help to get recognition for certain sensitivities

others do not perceive. People can, for instance, have legitimate reasons to
avoid an overload of noise and sound. We can think of other kinds of
labels: it is very accepted that someone with the label photographer has an
eye for light intensity. It is also accepted that someone with the label
painter sees more or identifies more colours. Autistic people share a simi-
lar experience, and their diagnosis can help others realise how they can
take the person in question into account. Given the heterogeneity of
autism, it sometimes remains unclear what people exactly have to make
room for when dealing with someone who has the diagnosis. Moreover,
autism is associated with dysfunctioning. The danger in this is that people
are not completely taken seriously anymore. Just as in the Middle Ages,
missing a hand or an arm or any other physical defect was regarded as a
sign of the devil, today, the term ‘autism’ for some people still means a
serious and peculiar disorder people cannot really make sense of. In other
words, a diagnosis offers a helping hand, but also has several, far-reaching
consequences on a social level. This is exactly why five of our interviewees
struggle with the question whether or not they should inform their
employer about their diagnosis.
After the diagnosis, a new task commences: relating to the diagnosis.
The sole explanation from the diagnostician about what to expect is not
 PERSPECTIVES ON THE FUTURE 119

enough. A diagnosis is welcomed as an explanatory model for previous

problems, but it should also offer a way out of the impasse many of our
people reside in at the moment they decide to get diagnosed. A diagnosis
by a psychiatrist also provides entitlement to compensations and support,
more so than for instance when someone has a hypersensitive personality:
a diagnosis allows you to stop participating in busy life for a while. In this
chapter, we describe how autism works in social relations and in the job
market. We also elaborate on the role of the social institutions after the
diagnosis.
The respondents who are in a relationship often speak very respectfully
about their partners. They often call this person one of the most important
people in their lives, because most of the time, they manage to take the
peculiarities of the respondents into consideration and act accordingly.
The clarification the diagnosis of autism offers is often also useful for the
people around the diagnosed person, and it can help these people deal
with this ‘being different’:

Yeah I do think for myself… Well it’s a double-edged sword, it’s difficult on the
one hand but it also makes things easier on the other hand. Now, my boyfriend
or my parents say, oh yeah well this happens because of that, while before the
diagnosis, these same things used to escalate into a fight. She can’t help it, so to
speak, so we’ll just leave it as it is. [Hannah]

Now that the diagnosis has been made, Sofie, for example, has a desire
to get in contact with other people with a diagnosis of autism, to talk to
them about the problems and how they deal with them:

For instance, in The Netherlands, there is a pub for autistic people, and I’m
like, I would like to get in contact with adults, with normal intelligence as well
of course, who also have autism, to talk about the issues they deal with. [Sofie]

Hannah sometimes works at the reception for the doctor who was part
of the facility she was diagnosed in. When she does this, she also meets
other autistic people, and notices how much understanding there is in an
environment with others who are dealing with a similar problem:

When I’m in that context, I feel that the people there are different, and that
there is a lot of understanding and that I can be myself there so much more. So
if the world would be more like that, for people like me – of whom I’m convinced
that there are a lot more – life would be easier. Then these people would dare to
120 K. HENS AND R. LANGENBERG

express themselves a lot more as well, and perhaps they would also dare to say
what they think more. But I think that the world isn’t ready yet, and that it is
still going to take a very long time. I don’t think, I don’t feel that I will live to
see the day, but maybe someday that day will come. [Hannah]

A bit further in the interview, Hannah explains that sharing a diagnosis

does not necessarily mean you feel a connection with that person:

… sometimes people also think that, oh yeah, they both have autism, I’m sure…
but that’s also just a person like any other, that doesn’t mean you have a connec-
tion… [Hannah]

A question on a few of the participants’ minds is whether they should

tell a few people outside their immediate surroundings about the diagno-
sis. Albert explains that he would lose credibility in his job as a family doc-
tor. That is why he thinks really well about who he tells and who he does
not tell:

The fear that I will no longer be taken seriously (which would be very difficult
for a general practitioner) and the incomprehension it would provoke. I’m not
yet sure at all whether I should keep the diagnosis to myself or share it. Sometimes
I do feel the desire to share the diagnosis and I do share this carefully, with people
I have selected in advance. [Albert]

Robyn says the diagnosis and the explanation she was given about the
diagnosis helped her explain her uniqueness to others:

Most people were like, this can’t be, but when I let them read the report, they
understood. Because that was the most important thing for me, the report,
because I was never really able to explain what my problems were. And that
little package, that was a bit like, voila, these are my problems, just read that
and then you know. And that was really a relief for me, like voila, now I no
longer have to try to explain that, but people can just read that and then they’ll
begin to understand. [Robyn]

For Robyn, the diagnosis and the diagnostic report serve as guidelines
with her problems. Since the diagnosis, she is able to make clear what is
going on with her because of how it is written down.
Although a diagnosis of autism can serve as an explanatory model in
itself, participants sometimes indicate that not much is being done with
the data that were generated from the tests. Carl says: “Yeah not that, just
 PERSPECTIVES ON THE FUTURE 121

that the world of the diagnosis is hyper flat.” Even though the tests often
indicate very specific cognitive abilities and deficits, this does not necessar-
ily mean that this collection of data is actually used effectively. During the
interview, Michael repeatedly refers to the time and money that is invested
in the tests, but that nothing is done with the results:

Yeah you often just get a score, and then you’ve got ASD or Asperger’s or I don’t
know what, but what you’re bothered about the most, which parts, and what did
you do wrong there, that you can learn something from that about how you
specifically should handle things. But they don’t do that. [Michael]

In Belgium, a diagnosis does not mean that you automatically get the
appropriate care. One of the possibilities that autistic people have is that
they can make an appeal for an autism coach. This is someone who guides
and supports children or adults, and who helps them discover their possi-
bilities and develop their talents. Although there are courses to become an
autism coach, it is not a protected title and there are no specific require-
ments regarding degrees you need to qualify. The care this autism coach
offers will therefore not always be refunded by your insurance company.
Sofie was given her diagnosis two-and-a-half weeks before the conver-
sation with us. She has good hopes that the person she contacted, a reme-
dial educationalist who is specialised in autism, will mentor her concerning
certain behaviours and habits that are difficult for her:

I don’t know if that’s different, but I do run into this. That if someone hurts
me, it feels as if a slow train comes crashing in. And she said, I’ve heard the
same from some other autistic people. I didn’t know that was the case, because
you don’t know these things. For instance when I’m overstimulated, that I – for
me it feels that way – immediately go from zero to ten… It’s as if there’s no
transition between these two extremes. For instance when someone’s tapping
their fingers on the table, I can only think like: “stop it, stop it, stop it”, and then
I can only say to that person: “STOP IT.” I don’t know how to say that in a
modest way, because my fuses blow. When that person stops, I immediately go
back to zero, but when he starts again, I’m immediately at ten. She [the coach,
KH] is going to teach me how to sense this sooner, and tell me how I can antici-
pate that… [Sofie]

Samuel gives a description of what he considers to be a good autism

coach. He also mentions that a tricky issue is the fact that traditionally,
counsellors have the most experience with people with a mental disability:
122 K. HENS AND R. LANGENBERG

A good autism coach is someone who works solution-oriented. Who begins with
what works, and then searches, together with the person, for what can be better
in his or her life, and what bothers him or her. People such as myself, in the sense
of my intelligence, and who are perhaps a bit more critical than on average…
Yeah, there is a very outdated image, that focuses on people with a slight mental
disability, with limited communication abilities and little insight into their
own autism. [Samuel]

For Bas, a good counsellor is someone who is able to translate between

the inner world of autists and the inner world of non-autists. His or her
task is then to function as an interpreter. He explains that ‘understanding’
autism on a theoretical level is not enough:

What do people need? That’s the issue, right. Yeah, sometimes I think: I would
just need to have someone with me for a week, a kind of interpreter, who can
dialogue between the NT world and the autism world. Who, with everything I
do, would say like: “look, he is going to expect that, if you just do this, you can
accomplish that. If you say that, you’ll make yourself unsympathetic, etcetera. If
you just fix it like that, it’ll be fixed nice and diplomatically.” Yeah, that would
actually be good. [Bas]

Marie also says she would like to have someone explain certain things
to her, things that are different with her:

I sought (and seek) help, amongst other things, not just because I want to
understand why I’m so overstimulated all the time or why I have problems with
change and surprises, why I sometimes develop strange eating habits, or that I
almost always notice it when a painting has been moved or removed. It goes
beyond that: I don’t know who I am and sometimes I also don’t know how I
should behave in certain social situations which others would label as ‘normal’.
Which behaviour is specifically me and which behaviour is learned or copied? If
I seek help for everything because I want to understand who I am in order to
avoid a new identity crisis (and depression), I expect information and not
smiling psychiatrists who supposedly know best. [Marie]

Tatiana explains that she receives good help from someone who also
has a diagnosis of Asperger’s syndrome. She concludes: “I would like it if
more of my counsellors were autists. That’s secretly the kind of help I
want.” She would also like to start a study so she can eventually help
people with a diagnosis of autism herself.
 PERSPECTIVES ON THE FUTURE 123

Robyn, and Sandra, Marie, Hannah, Samuel and Albert too, found a
good counsellor after the diagnosis. Matteo explains that, because of his
diagnosis, he is entitled to a job coach who helps him find a job. Samuel
tells us that financial obstacles can, however, prevent you from meeting
the autism coach as often as you would like. He says that he meets with his
coach once a month, although it would actually be better if he had four
appointments in a month. He cannot afford that financially. Sandra
describes the difference between the family worker of her children and
other counsellors she has met:

And I think it’s because of the direct communication, because he is just so direct
and so honest, and that I’m just who I am and he’s not constantly interpreting
my behaviour. For instance, with a few counsellors who don’t have autism, I
have the feeling that I have to explain myself, that I have to justify why I’m say-
ing that or doing this. Or that they think there’s more to it than meets the eye.
Sometimes I don’t know anymore what’s expected of me. He doesn’t have autism
himself, but I don’t have that with him. That’s quite important: if you need
counsellors, you have to look for the good ones. [Sandra]

Later in the conversation, Sandra further clarifies:

A counsellor doesn’t have to have ASD in order to be able to understand me. It’s
about personality, letting someone be who he is. I’m convinced that there are also
counsellors that are experts on autism, who don’t always do the right thing. It
can be a pitfall when you know a lot about ASD and then to think you really
understand that person with ASD. It is indeed quite important that you look
for counsellors that suit you, with whom you feel good and that you don’t just
take an autism specialist, because it’s a specialist. You must surround yourself
with the right caregivers for YOU, who is a good counsellor for YOU! [Sandra]

Still, not everyone is happy with the help they got. Els describes her
counselling as very patronising:

Yeah, that counselling, it wasn’t very good. She’s very patronising. She is more
focused on autistic people who are more dependent. As if that therapist also
wanted to make me depend on her, as if she had to be a friend for me. Perhaps
I judged it incorrectly, but she kept wanting to talk about things that aren’t a
problem for me. I said three times already that I wasn’t going to go there any-
more, and still I went, every time… I didn’t have an alternative. I just told her,
look, when I’m with you I don’t say the things I actually planned to say. But she
kept curious about things that weren’t important to me. She sometimes already
124 K. HENS AND R. LANGENBERG

concluded things before I did, and in the beginning that may have been easy for
her because she already knows a lot and has experience. But she takes these con-
clusions as a starting point and then they’re also not always correct or they are
correct but of marginal importance to me, while there are other issues that are
more important to me, but which I don’t seem to be able to address. The books I
read, the congresses and lectures I go to and the conversations I have with other
autistic people help me much more. [Els]

Els explains that she hopes that contact with likeminded people, with
other autistic women for instance, will help her more than the guidance
she has had so far.
Baukis tells us that the model of the Flemish Autism Association is a
good example of how autistic people should be approached:

The VVA often functions as a model to show what a good way of working is for
people who need care. I think that’s absolutely correct: their starting point is
very much who you are, what you ask, what you can handle, and they definitely
don’t overlook your strong points. I think that’s very important, because well,
there is a lot that you’re not or less able to do, but there’s also a lot that you can
do, and let’s just continue from that. When you can’t go to school (anymore) for
instance, we will scale it back to a level that’s doable for you, and from there
we’ll start building up again. We’ll see how far we get. We work with our strong
points. And I think that’s a good way of working. The first and most important
thing is respect for the person who sits there. Please don’t forget that, that you’re
dealing with people and that every person – however limited – has feelings and
deserves to be treated with respect. [Baukis]

Baukis indicates that this model is based on respect and underlines the
importance thereof in relation to the other. Respect offers an opening
towards recognising everyone’s personal ability to act and to judge.
For some respondents, the diagnosis offers the necessary social protec-
tion and support. The diagnosis has, for BartDelam, enabled him to start
working part-time. Els is on sick leave, and is not sure if she wants to go
back to her toxic work environment. Samuel explains how his partner,
who also has autism, is excused from the obligation to attend office ­parties.
Bas identifies two advantages of having a diagnosis of autism: on the one
hand, it has confirmed his hypothesis. On the other hand, it is a legitimis-
ing factor on the job market:

I wanted to refer to, call it the legitimising factor, where it’s difficult in many
areas, including the job market… Yeah, you can also benefit from your diagnosis
 PERSPECTIVES ON THE FUTURE 125

right, in relation to the state. People at the RVA [Rijksdienst voor

Arbeidsvoorziening, the Belgian National Employment Service, KH] will
react differently for instance, when you say it’s autism, than when that’s not the
case. There’s also an explanatory factor in it. And I have no scruples about it,
because I know that the disadvantage I experience from autism is still much
bigger than the few advantages, right. And unemployment in itself, with all its
implications, still remains an immense disadvantage for many autistic people.
Others seldom take us into account, but we do have to take someone else into
account, day in and day out. And then they tell us that we so stubbornly hold on
to our own principles etcetera. So that’s also not fair at all. [Bas]

A few participants hesitate to tell others that they have a diagnosis.

Hannah says that a diagnosis will not be accepted at all at work. Michael,
who is looking for a more permanent solution than the flexi-jobs he is
doing at the moment, says it is better to use a different diagnosis, NLD,
because it is more socially accepted. As mentioned several times before,
autism is generally associated with isolated, socially inhibited and eccentric
personality traits.
Sandra did share her diagnosis at work. This disclosure, however,
resulted in her work no longer allowing her to perform a few of her previ-
ous tasks.

People say, you’ll not be able to do this, and that… That was just immediately
decided, in my place, or things were radically extended. While, okay, contact
with people in my job, that’s very difficult, but I’ve always done that perfectly
well, but it is quite tiring. And yeah, it actually made me sick a bit, you have
to put a lot of energy into that. But to say like, you’ve got autism, okay, no more
customer contact at all … [Sandra]

Sandra feels that her employers were too quick to judge when they
decided that she should no longer get in contact with clients:

I also say that: the others have more problems with me than I have with them, I
think. I also often say to those people like, if you think or feel that, that says more
about you than about me. People of course don’t really like it when you say that,
but it’s true. And yeah, ever since I got the diagnosis, people sometimes start to
think in my place and will unravel entire theories. But I’m often like, yeah, but
all of that isn’t right. That’s quite frustrating, that’s tiring. In that sense, I do
recognise that, that they shouldn’t want to take over everything, they just have
to let me be who I am, right. That would be the easiest. [Sandra]
126 K. HENS AND R. LANGENBERG

Michael has had similar experiences. He received special education as a

child, and vocational education afterwards. Now, he is looking for a job
that suits him. He is counselled by a psychologist and he has a job coach,
but he thinks it is a pity that they—in spite of all the tests—do not seem to
be able to use this data to find him an appropriate job. After the diagnosis,
he once told someone he has autism, and his experience was similar to
Sandra’s:

And then I’m not even allowed to do most activities because people think I can’t
handle it. I’m indeed not capable of certain things, but people don’t often ask
me what’s difficult for me for instance. Or what can we do and what can’t we
do. And we could supposedly talk things through together, but like not really…
People also don’t make time for that, and a job coach will also not come visit
but… You can’t explain that they have the wrong impression of it. Then I think,
I can be social, I can do that, and then you try to explain that a bit, but…
[Michael]

At another point in the conversation, Michael says that people treat him
like a child when he tells them he has a diagnosis. According to him, tell-
ing people that you have a diagnosis of autism runs the risk of people
solely looking at you in light of a stereotypical image which is connected
to the diagnosis. People, for instance, also assume that he is not able to do
certain things, and that he will, therefore, never do them again. In the
context of individual job guidance, Michael has done several tests to
decide what could be an appropriate job for him. He is very disappointed,
however, that the results of these tests have not been used:

When we started, I had to do several tasks and I have an entire report about it,
but then they didn’t do anything with it. Then they just say: “They’re looking for
people there, why don’t you start working there.” They did make a work schedule
I think, but other than that they didn’t look any further. And that’s what
they’re for normally, those tests, to test certain jobs and all. Yeah. And then to
afterwards look what did they see and what has happened in the job… And then
I think, why did you make me do an assessment to begin with, to eventually not
use much from it at all. [Michael]

On a personal level, the future for our respondents may not be simple,
but it is possible to gain an overview and a future is conceivable from an
open developmental perspective. Socially, however, and in relation to
work—more specifically the finding of work or not or being able to function
 PERSPECTIVES ON THE FUTURE 127

in the workplace or not—it is still complex sometimes. Our respondents

do offer suggestions as to how they could be put on their way. They are
looking for help—and some have already found it—to better understand
communication. The quest for tools that could make their daily life easier
leads for example to usable information about sleeping hygiene or about
self-organisation.
In their qualitative research on anxieties in young adults with autism,
Trembath and colleagues found, for instance, meditation techniques
(‘grounding oneself’), which some counsellors apply to help this target
audience deal with their anxieties.1 By disclosing your diagnosis as an
adult, however, you inevitably run into dominant prejudices. Fear of prej-
udices can lead to the decision to remain silent about a diagnosis.
In a study about the experiences of 12 students with a diagnosis of
autism at universities in the United States, Wiorkowski describes how dis-
closing your diagnosis can lead to certain assumptions with administrative
or teaching staff. More specifically, it leads to judgments about what this
target group can or cannot do. As a consequence, the facilities that are
offered to people with a diagnosis are not always perceived positively. As
an example, examinations provided for this target group, in separate test
rooms and outside teaching hours, are perceived as difficult by the people
concerned.2 Our interviewees describe these possibilities as limitations to
their professional lives. They indicate that they would prefer to not to go
too far in adapting to their diagnosis in order to prevent confrontations,
since a confrontation also offers them the possibility to learn.

Bibliography
Trembath, D., C. Germano, G. Johanson, and C. Dissanayake. 2012. The
Experience of Anxiety in Young Adults With Autism Spectrum Disorders. Focus
on Autism and Other Developmental Disabilities 27 (4): 213–224. Sage
Publications.
Wiorkowski, F. 2015. The Experiences of Students with Autism Spectrum
Disorders in College: A Heuristic Exploration. The Qualitative Report 20 (6):
847. Nova Southeastern University.

1
Trembath et al. (2012).
2
Wiorkowski (2015).
 CHAPTER 9

Afterthoughts

Abstract What is autism? With this study, we have chosen to open up the
space of interpretation by using the spoken words of our respondents. We
used a phenomenological approach by asking questions regarding (the inter-
pretation of) personal experiences. In drawing up the questions as in the anal-
ysis of the theoretical explanatory models of autism, we have given the story
of the respondent—diagnosed with autism as an adult—a central role.
Especially the variety of—and not the similarity between—experiences of peo-
ple with an autism diagnosis has been given a platform in this book. Our study
shows that the issue may perhaps not really be what the essence of autism
actually is, but rather how it works as a concept. If we can grasp how some-
thing works, it eventually also teaches us something about what it actually is.

Keywords Communication • Dynamics • Interaction • Sensory

differences

Throughout the years, the question “What is autism?” has been answered
by psychologists, psychiatrists, genetics and neurologists in several and
very diverse ways. After decades of genetic and neurological research, biol-
ogy has—up until this day—not yet provided us with a univocal cause of
autism. It seems clear that there is something different in the brains of
people with a diagnosis of autism, but what that could be and where exactly
this difference is to be located remain difficult to grasp. Given the many
and at times contradictory scientific findings, it is sometimes suggested

© The Author(s) 2018 129

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1_9
130 K. HENS AND R. LANGENBERG

that autism does not really exist, or that autism is merely a linguistic con-
struct, lacking an underlying essence. With this study, we have chosen not
to engage in this discussion, but rather to open up the space of interpreta-
tion with the spoken words of our respondents. Following the hermeneu-
tic outlook of the philosopher Wilhelm Dilthey, this study does not wish to
enter the realm of explanations (what is autism really?) but rather the realm
of understanding.1 We have asked our target group the following ques-
tions: “What does it mean to receive a diagnosis of autism when you are an
adult?”, “Does a diagnosis help to see your own being different in another
perspective?”, “Is ‘autism’ a sufficient explanation?”, “Does the meaning
of autism merely lie in the instrumental – with this diagnostic label, I will
have access to more facilities and understanding at work and with my fam-
ily – or do you also really learn something about the way you function in
daily life?” We used a phenomenological approach by asking questions
regarding (the interpretation of) personal experiences. We consciously
placed the quest for an explanation about the phenomenon autism outside
the setup of our research. In drawing up the questions as in the analysis of
the theoretical explanatory models of autism, we have given the story of
the respondent—diagnosed with autism at a later age—a central role.
Especially the variety of—and not the similarities between—experiences of
people diagnosed with autism has been given a platform in this book.
In these afterthoughts, we want to take a moment to look at several
‘common threads’ which we have noticed during our analyses of the inter-
views. We are aware of the fact that generalising personal experiences of 21
people is impossible. Moreover, there has surely been some bias in our
selection. Our participants signed up in order to tell their stories about
their experiences. They are people who were diagnosed as an adult and
who are able to express themselves in spoken or written language. People
sometimes appealed to other forms of expression, such as image, dance
and music. We did not solicit diagnostic reports in order to prevent our
own impressions to be influenced by certain data about processing speed,
IQ etcetera. Moreover, it is not the intention of a qualitative study to gen-
eralise findings in the first place.
We have noticed some similarities between personal stories. Our respon-
dents often recount stories about sensory overstimulation, which can
become so all-encompassing that it can severely complicate their daily rou-
tine. Several respondents also told us about feeling overloaded in the past,

1
Dilthey (1990).
 AFTERTHOUGHTS 131

because they were taking on a lot more than they could handle. The inten-
sity of perceiving reality, deeply and specifically thinking through (the
event of) that reality—far more intensely than what is socially accepted—is
something that came up many times in many of the interviews. Noticing
things that others might miss or ignore can certainly have its advantages in
certain work environments and can even be a lifesaver. It can, however,
also lead to people getting lost in details, which inhibits them from mov-
ing forward. The question remains whether this way of thinking means
you de facto get stuck, or that our society should make room for people
who want to dwell a bit longer on certain things they encounter. Both at
work, as everywhere else, everything must progress quickly. That is why
we perhaps too easily expect people to just work with limited instructions,
superficialities and presumptions. We notice, however, that our partici-
pants simply have no other option than to seek out and notice certain
nuances. Perhaps people need more room to be able to take time and
dwell on certain issues. Instead of using the diagnosis to problematise a
certain person and his/her behaviour, it should be used as a starting point
to better analyse the context in terms of strengths and problems. How did
people deal with the problems they experience and the problems their sur-
roundings experience up until now? What can be done about this, taking
strengths and weaknesses into account?
Whether autism is essentially a difference in processing information or
whether it is first and foremost a deficit in social interaction is still a topic
of discussion among autism researchers. More recent theories, such as the
Intense World Theory2 or the High, Inflexible Precision of Prediction
Errors (HIPPEA)3 suggest exactly that social interaction is hindered by
underlying differences and problems in sensory and information process-
ing in general. In this light, it is even more remarkable that our partici-
pants explicitly emphasise their social mindset. Many of them stress that
they have a need for regular, good conversations that go beyond the
superficial ‘chitchat’ level. Our respondents have to contend with the pre-
conception that autistic people are less empathetic or that they care less
about others. Some of our respondents tell us extensive stories about their
issues regarding certain communicative misunderstandings. It seems only
logical that—when you keep running into these misunderstandings—you

2
Markram, Rinaldi and Markram (2007).
3
Van de Cruys et al. (2014).
132 K. HENS AND R. LANGENBERG

would eventually prefer to withdraw from social interactions. Still, people

indicate that they also want to learn to communicate in such a way that
they can come to a mutual understanding.
It may be useful to think about what it actually means to ‘understand
an other’. There is an increasing amount of knowledge available about
how brains develop dynamically. We should also begin to understand com-
munication and social skills in a more intersubjective way, as an active
interplay between individuals. For instance, how normal it is when a per-
son asks an additional question that the other has no patience for that or
that he is reluctant to further examine the issue that is raised. Perhaps this
is about dynamics which are and remain important throughout people’s
lives. We recognised, in our participants, a will to communicate with the
other, but because people are stuck in their preconceptions or are over-
whelmed by impressions that are considered to be of secondary impor-
tance, it just sometimes does not work. Conflicts and misunderstandings
can, however, also be a motivation to learn actively. The fact that our
participants have somehow been able to persevere throughout their lives
is a sign of resilience and suggests at least that there is a possibility and a
will to learn and to develop. Although a diagnosis of autism can be inter-
preted as a certain judgement about communicative qualities, it apparently
does not have to be that way. It can offer insight into where things go
wrong, and because of that it can be an opening to gain a mutual under-
standing. What follows are adaptations and clarifications in communica-
tion. This is of course only possible if the diagnosis is regarded as a starting
point for approaching one another, and not as a label and package of
measures to remain standing. It is not about creating separate worlds for
several kinds of people, but about emphasising the learning effect of con-
frontations in the analysis.
Besides disclosing our respondents’ struggles and experiences of being
different, we have also tried to illustrate how people have experienced the
diagnostic process and the diagnosis itself. After all, they had questions
about themselves and how they function in society, and they have decided—
often after a long period of suffering—to get tested for autism. Some of
them immediately identified with the diagnosis, in some cases initially via
the diagnosis of their children, for others the suggestion to get tested
came as more of a surprise. For many, recognition came after the ­diagnosis,
even though some have doubts about the validity of the tests or about
stereotypical representations of autism in general. For most of our respon-
dents, autism offers the best description of their being different they have
 AFTERTHOUGHTS 133

heard of, so far. We do see many similarities with the concept of moral
career as described by Erving Goffman, for instance, in his books Stigma
and Asylums.45 He writes that:

Persons who have a particular stigma tend to have similar learning experi-
ences regarding their plight, and similar changes in conceptions of self – a
similar ‘moral career’ that is both cause and effect of commitment to a simi-
lar sequence of personal adjustments.6

With stigma, Goffman refers to traits or circumstances that make some-

one different than others, and in that respect also a bit conspicuous. This
can be a physical handicap, an addiction, a certain social status or a psychi-
atric diagnosis. The—possibly—new identity as provided by for instance a
diagnosis, makes people look at themselves differently.
Our participants also tell us that the diagnosis provides a certain insight
which makes them regard the problems they had earlier on in their lives,
differently and anew. Some participants regard the diagnostic process with
a certain detachment, while others emphasise the scientific objectivity of
the tests. There is not one interviewee who does not have their own opin-
ion about his or her condition and problems. This personal judgement is
at least as important as the diagnosis itself. An official diagnosis is mainly
necessary in order to make one’s own judgement come across as trustwor-
thy, for the respondents themselves but also for the people around them.
And even though all respondents always kind of knew that they functioned
differently in certain areas than other people, the diagnosis of autism also
provides words for what exactly is the matter. How you think about your-
self also depends on the words that are available. In this respect, a diagno-
sis of autism is similar to what Ian Hacking described as a “looping effect”7:
the classification changes the classified, but also the other way around.
Because people do not completely fit in certain categories, their experi-
ences will also begin to influence the categories. An example thereof is the
addition of sensory differences in DSM-5: because autistic people have
indicated this as the core of their experiences, this has eventually become
a part of the classification system. People with a diagnosis of autism will

4
Goffman (1990).
5
Goffman (1963).
6
Idem. p. 45.
7
Hacking (1996).
134 K. HENS AND R. LANGENBERG

hopefully get more and more room to share their own experiences, and
will thus participate in a further development and understanding of the
meaning of autism.
A majority of our participants had already received other diagnoses:
borderline personality disorder, obsessive-compulsive disorder, learning
disorders such as non-verbal learning disorder… Nevertheless, most of
our respondents consider the diagnosis of autism to be the most real and
final. We think that this has to do with the fact that autism is considered
to be more ‘real’ than, for instance, personality disorders. Autism is some-
thing that is embedded in your brain, your biology. On top of that,
research on finding the biological (genetical, neurological) cause of autism,
is currently receiving more financing than research on other psychiatric
diagnoses. Autism is how you are wired, and in that respect this diagnosis
relieves you of perfectionism, even more so than other diagnoses. Before
the diagnosis, some of our participants used to set very high standard for
themselves, standards they were often not able to live up to. The diagnosis
is for them a sign that they can or do not have to do this anymore. Autism
is also a very heterogeneous phenomenon. Something is wrong inside
your brain, but since autism is now considered to be a very broad spec-
trum, it is not necessary to completely coincide with the stereotypical
image. It is perfectly possible and not contradictory to say that you are
autistic, but at the same time extremely empathetic. Or that you have
problems understanding or assessing the other, but that you do think that
you can still learn a lot in that area. This is why a diagnosis is not a strict
mould from which you cannot escape, but rather a guiding beacon that
indicates what is easy and what can (still) be difficult.
What does autism mean? How should we ethically handle diagnoses?
We agree with Richard Rorty, when he says—referring to Gadamer’s
wirkungsgeschichtliches Bewusstsein—that what we need is “an attitude
interested not so much in what is out there in the world, or what hap-
pened in history, as in what we can get out of nature and history for our
own uses.” He continues: “In this attitude, getting the facts right (about
atoms and the void, or about the history of Europe) is merely propaedeu-
tic to finding a new and more interesting way of expressing ourselves, and
thus of coming with the world.”8 Our study shows that the issue may
­perhaps not really be what the essence of autism actually is, but rather how
it works as a concept. If we can grasp how something works, it eventually

8
Rorty (1980).
 AFTERTHOUGHTS 135

also teaches us something about what it actually is. This does not mean,
however, that we can just decide what autism really is and what it is not by
ourselves, or that it would be something entirely subjective. The experi-
ences of being different, to which our people testify, are most definitely
real, and often shared as well. Research on autism, and on human experi-
ence in general, should, besides explaining, be more focused on under-
standing. Several participants have, after their diagnosis, tried to understand
how they could learn while interacting. Some of them have, for instance,
learned to interrupt themselves when they notice that they are getting
stuck or are overreacting. This is no different for people without a diagno-
sis of autism however. They too can, while interacting with those who
function differently on a neurological level, learn to adapt their own
expectations and behaviour. Understanding is after all by definition
intersubjective.
We hope that this study has given an insight into how autism as a diag-
nosis has been a help to people who, at a certain moment in their lives,
have encountered certain challenges. We would, therefore, plead for an
approach to autism that is not so much affirmative and dogmatic, but
rather investigative and dynamic. The testimonies of our participants show
the possibilities of such an approach to research.

Bibliography
Dilthey, Wilhelm. 1990. Ideen Über Eine Beschreibende Und Zergliedernde
Psychologie (1894). In: Die Geistige Welt, 139–240. Gesammelte Schriften,
Vol. 5. Vandenhoeck & Ruprecht.
Goffman, Erving. 1963. Stigma. Notes on the Management of Spoiled Identity.
Englewood Cliffs: Prentice Hall.
Goffman, Erving. 1990. Asylums: Essays on the Social Situation of Mental Patients
and Other Inmates. New York: Anchor Books.
Hacking, Ian. 1996. The Looping Effects of Human Kinds. In Causal Cognition,
ed. Dan Sperber, David Premack, and Ann James Premack, 351–383. New York:
Oxford University Press.
Markram, H., Tania Rinaldi, and Kamila Markram. 2007. The Intense World
Syndrome – An Alternative Hypothesis for Autism. Frontiers in Neuroscience 1
(1): 77–96. Frontiers media, October 15.
Rorty, Richard. 1980. Philosophy and the Mirror of Nature. Princeton: Princeton
University Press.
Van de Cruys, Kris Evers Sander, Ruth Van der Hallen, Lien Van Eylen, Bart
Boets, Lee de-Wit, and Johan Wagemans. 2014. Precise Minds in Uncertain
Worlds: Predictive Coding in Autism. Psychological Review 121 (4): 649–675.
American Psychological Association, October.
 Appendix: The Helping Thoughts
of BartDelam

Helping thoughts are words or short sentences that help me skip the usual
extensive and inefficient stream of thoughts in order to come to a quicker
and better decision or result.
Helping thoughts are a technique for me to compensate for the nega-
tive consequences that result from the different way of processing infor-
mation that is typical of ASD. Examples of this are a slower processing of
information, the processing of details, the desire for clarity and predict-
ability, the lack of imagination, rigidity, problems with the regulation of
emotions, lack of empathetic abilities, problems with planning, context
blindness, but also secondary problems such as anxiety, stress, a negative
self-image, fallacies, perfectionism, worrying, a lack of assertiveness, a lack
of initiative, social anxiety, annoyances and conflicts.
Helping thoughts prevent short circuiting in my thoughts. Because of
ASD, many of my cognitive processes are not sensitive or intuitive, some-
thing which NT people often do have. Instead, all cognitive processes
have to be reasoned rationally. First and foremost, this requires more time.
There are also many senseless and inefficient detailed thoughts associated
with this, which prevents people from seeing the main issue. It becomes a
chaos of thoughts, which eventually leads to a short circuit. When that
happens, I am no longer able to think straight and it is no longer possible
to achieve results.

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138 APPENDIX: THE HELPING THOUGHTS OF BARTDELAM

Some helping thoughts are similar to clichés (something that has been
said so often that it no longer means a lot), but to me, they are not clichés
at all. It is not some little story I tell myself to gather strength, because
when I do not really believe it, it does not have any effect.
The helping thought is a kind of short summary (existing of one word
or one sentence) of a previously reasoned line of thinking. When the cogni-
tive processes fall short, the helping thought helps me to skip the complex
line of thinking in order to come to a result much quicker. Thus, behind
each helping thought, there is an extensively reasoned line of thinking.
What can be a helping thought to me does not have to be one for
everyone. People with a different personality can sometimes benefit from
an opposite thought.
In order to be able to use the helping thoughts, it is very important to
recognise, in time, the situations wherein these thoughts can be used. For
autistic people, it is not obvious to make contact with their own feelings
and problems and to ascribe the correct meaning to them. Along the way,
I have trained myself to recognise those situations and to evoke the correct
helping thought in time. For me, they are immensely important, as they
enable me to quicker and better deal with the problems which arise from
the fact that I process information differently.
Examples of helping thoughts:
Strange
Source: my own finding
Helps me to get more in touch with my feelings, and to deal with unex-
pected issues in relation to others better.
Background: in social situations, it very often occurs that something
happens which I did not expect; for instance, an unfriendly response,
manipulation, an unexpected proposal… I often do not realise what is
happening. It gives me a ‘strange’ feeling and a sense that something is not
right (the way I thought about it), but I do not exactly know what it is. It
makes me more insecure about how I should deal with it. Only afterwards,
when I rethink the situation, I notice that something happened that I did
not want. At that moment, I feel confused and powerless. Afterwards, it
feels as if I fell into a trap. When I manage to connect this uncomfortable
feeling to the helping thought ‘strange’, I realise at that moment that
something is happening to me but I do not exactly know what it is. My
most suitable response then is to win time, so I can reason what is happen-
ing and what the best reaction would be.
 APPENDIX: THE HELPING THOUGHTS OF BARTDELAM 139

Take a Step Back

Source: my own finding
Helps me to return from the details to the main issue.
Background: in conversations with others, as well as in my own
thoughts, I often get entangled in useless details. While discussing with
others, I also easily let myself get trapped in a distraction towards a detail
which has almost nothing to do with the main issue. When I feel that I am
going to get trapped therein, these helping thoughts can help me to ‘reset’
the thought process to return to the main issue.
Don’t Think, Do
Source: relaxation therapist
Helps me to stop putting off little tasks and, therefore, helps me to
come to a result much quicker.
Background: in order to be able to start something, the task must be
completely clear in advance, often in detail. I have to be able to imagine all
the steps of the task and all possible problems must be eliminated
beforehand.
With more complex or new tasks, it is virtually impossible to have a
clear view of the entire script in advance, which results in not getting
started on the task.
With the helping thought ‘don’t think, do’, I can convince myself to
start the task anyway, even if not everything is clear in advance. I know
that it is impossible to foresee everything. I no longer have to overthink all
options and consequences in detail. By beginning with the task, I come to
results much quicker. By starting the task, the next steps become clear by
themselves, as it were. The full task is automatically divided in subtasks.
Instead of having to have the subtasks clear in advance, clarification now
comes while executing the task. I also know now that problems can always
arise, but when that happens I will try to solve them at that moment
(instead of beforehand).
We Will Solve the Problems When They Arise
Source: Jean-Luc Dehaene1
Helps me to let myself be guided less by all that can go wrong. It helps
me to stop putting off little tasks and, therefore, to come to a result much
quicker.

1
Prime-minister of Belgium 1992–1999.
140 APPENDIX: THE HELPING THOUGHTS OF BARTDELAM

Background: this helping thought is in line with the helping thought

‘don’t think, do’. Just as everything has to be clear in advance, I have the
tendency to want to foresee and solve all possible problems beforehand.
This thought process slows everything down, which results in the fact that
eventually nothing happens. In the meantime, I also realise that only a
fraction of the foreseen problems will ever become reality. For less impor-
tant issues, it is therefore better for me if I let go trying to predict and
solve all possible problems beforehand.
It’s not Amputating a Leg
Source: relaxation therapist
Helps me to be less perfectionistic and to make a distinction between
the important and the less important issues.
Background: in everything I did, I tried to be as perfectionist as possi-
ble. I certainly did not want to make mistakes. Everything was equally
important. The relaxation therapist pointed the importance of seeing
something in the right context out to me. A surgeon who has to amputate
a leg should under no circumstance amputate the wrong leg. An entrepre-
neur who has to pay a bill of several millions of euros, better not pay this
bill twice. Hence the helping thought: ‘it’s not amputating a leg’. The
things I do are never as big as amputating a leg. With the work I usually
do, I am allowed to make a (small) mistake once or twice. And if there is
a mistake somewhere, it can usually still be corrected (contrary to the
wrong amputated leg). I, therefore, no longer have to think that every-
thing is equally important, and am allowed to be happy with a normal
satisfying result.
Says Who?
Source: relaxation therapist
Helps me to get in touch with my feelings, to be less perfectionist, to
consider the context better and to take more distance from rituals.
Background: because of my autism, I have a strong tendency to hold on
to all sorts of little rules. I have incorporated those rules along the way.
They are often very strict and detailed. They tell me what and how I
should do everything. I often no longer know where these rules came
from, but my inner voice (inner critic) keeps repeating them. These lead
to perfectionism (to live by all those rules), fear of losing control (because
I expect others to apply those rules as well) and discontent or a feeling of
failure (because I eventually do not manage to apply all these rules). When
I notice again that something has to go the way I want, the helping
 APPENDIX: THE HELPING THOUGHTS OF BARTDELAM 141

thought ‘says who’ helps me question the rule. Is it really so important

that it happens my way, in other words, am I really convinced that it has
to be like that? Or is it a learned rule that is used, whether or not it is
appropriate?
Today Is Not Going So Well, Tomorrow Will Be Better
Source: my own finding
Helps me to get rid of problems and setbacks quicker, and to better
handle negative feelings.
Background: there are days when you have a few setbacks. Instead of
spiralling into negative thoughts because of this, I use this helping thought.
I realise then that it is best if I temporise that day a bit (in order to respect
my boundaries). It helps me get rid of negative feelings about this much
quicker (instead of endless worrying). I realise that this only says some-
thing about that one day when it was not going so well, and that I should
not take this personally (I always have setbacks, I can never do anything
right, I am in a negative period again…).
First Things First
Source: relaxation therapist
Helps me to plan better and stress less. It also helps me separate the
main issues from the side issues.
Background: I have a lot of trouble planning things well and assessing
the right amount of time for this. For everything I do, I need more time
than I initially thought, which means that I always have to hurry or that I
am sometimes late. I am also much slower than others. This helping
thought is mostly important for small, more basic planning. With this, the
order of planning is adjusted more realistically: instead of beginning with
things I think I can do within the available time, I now first start with
things that are important for the remainder of that day.
I Am Me
Source: my own finding/books
Helps me to be less perfectionistic and allows me to be myself more.
Background: before the diagnosis of ASD, I was not aware of where my
being and thinking different came from. I subconsciously tried to present
a neurotypical image of myself to the outside world as much as I could.
This image was created based on the high standards I set for myself. In
order to answer to that neurotypical image, I consciously and subcon-
sciously used several coping strategies. My weak or less pretty sides were
142 APPENDIX: THE HELPING THOUGHTS OF BARTDELAM

concealed, which eventually caused me to never really dare to be myself.

Since the diagnosis and the knowledge I gained from it, I now dare to be
myself a lot more. I can accept myself as I am much better now, with my
good and my not so good sides. I am me, and others have to take me as I
am now.
The Others Are Not Like Me
Source: my own finding
Helps me to learn to understand others better on the one hand (chang-
ing of perspective) and to better clarify myself towards others on the other
hand.
Background: the power of this helping thought is in the inversion.
Instead of ‘I am not like the others’, I here intentionally use ‘the others are
not like me’. The perspective is moved. With ‘I am not like the others’, the
perspective comes from the other who sees that you are different. With
‘the others are not like me’, the perspective comes from within myself. I
look at the others and I see that they are not the way I think they should
be. I realise that it has mostly to do with my autism (different way of pro-
cessing information), and I try to put myself more in the place and context
of the others. This also works the other way around. The others cannot
know what I think and feel, and why I do what I do. When I think there
is a difference that might be important for someone else to know in order
to understand me better, I try to clarify this more and better.
Other helping thought (list is incomplete)
Children make mistakes
Without failure, no success
Thankfully, there is still work left for tomorrow
Sometimes you win, sometimes you lose
Love it, leave it or change it
Let it go
Stop
Zen
Everything will be okay
We all have our crosses to bear
I don’t have to be perfect today
Feel
I’m going for it and I’ll see what happens
I’m calm, completely calm
How are we going to deal with that/how are you going to deal with that
 Glossary

ADOS-2 A standardised observational instrument used for research on

communication, social interaction and (imaginative) play. It can be
used when an autism spectrum disorder is suspected.
Asperger’s Syndrome developmental disorder as defined in DSM-IV,
characterised by impairments in social interactions and a limited reper-
toire of interests and activities. Separated from the classical autistic dis-
order in DSM-IV, because there are no deficient language skills in
childhood with Asperger’s syndrome. Since DSM-5, Asperger’s
Syndrome is part of the category Autism Spectrum Disorder.
Attention Deficit Hyperactivity Disorder (ADHD) also known as
attention deficit hyperkinetic disorder, as defined in DSM-5.
Characteristics are impulsive behaviour, concentration problems, rest-
lessness and learning disabilities.
Borderline Personality Disorder emotionally unstable disorder, as
defined in DSM-5. Abnormal behaviour, characterised by unstable
interpersonal functioning, unstable self-image and heavy mood swings.
Complex figure of Rey-Osterreith neuropsychological assessment.
Assessees are asked to reproduce a drawing of a complex figure from an
example. After ten minutes they are asked to reproduce it again, this
time from memory.

© The Author(s) 2018 143

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1
144 GLOSSARY

Context blindness trouble with using the context when giving meaning
to something.2
Diagnostic and Statistical Manual of Mental Disorders (DSM) stan-
dard classification of mental disorders, published and produced by the
American Psychiatric Association (APA). The current edition is
DSM-5.
Deficient Central Coherence the tendency to perceive the world in frag-
ments and having troubles seeing a whole. According to some authors,
this is the underlying explanatory model for autistic behaviour.
Executive Functions cognitive processes that enable us to plan ahead
and to purposefully solve issues.
Highly Sensitive Personality (HSP) personality type that is more than
average stimulated by sensorial stimuli and other experiences.
Intense World Theory localises the origin of autistic behaviour in neu-
robiology: assumes that people are unable to process sensorial input
because of hyperfunctioning local neural microcircuits. Developed by
Henry and Kamila Markram.
Interpretative Phenomenological Analysis a type of qualitative research
that aims to provide insight in how a specific person, in a specific con-
text, gives meaning to a certain phenomenon.
Minnesota Multiphasic Personality Inventory (MMPI) a standardised
psychometric test that tries to map the person’s personality and possible
personality disorders.
Multiple Complex Developmental Disorder (MCDD) a developmen-
tal disorder that used to be classified as PDD-NOS. Characterised by
problems with regulating emotions and thoughts, and often psychotic
symptoms. Is now categorised as part of the autism spectrum.
Neurodiversity the belief that different neurologic functioning – such as
autism – is not necessarily pathologic, but rather a natural version of
functioning normally.
Neurotypical people who have an average neurological and psychologi-
cal development of the brain, as opposed to those who are
‘neurodiverse’.
Non-Verbal Learning Disorder neuropsychological diagnosis that
mostly causes problems in the nonverbal area. For instance, spatial
awareness.

2
Vermeulen (2009).
 Glossary  145

Obsessive-Compulsive Disorder disorder as defined in DSM-5, charac-

terised by obsessions (thoughts) and compulsions (actions), that cause
suffering and dysfunctioning.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-­
NOS) in DSM-IV a rest group for developmental disorders that meet
the criteria for pervasive developmental disorders, but not enough
characteristics of a specific pervasive developmental disorder.
Categorised under Autism Spectrum Disorder Since DSM-5.
Phenomenology philosophical movement, originated in the late nine-
teenth and early twentieth centuries. Tries to deduct essential charac-
teristics from direct and intuitive experiences, irrespective of
presuppositions. In qualitative research, the phenomenological method
is primarily focused on describing the experience of a certain
phenomenon.
Qualitative Research empirical research which is descriptive in nature
and looks for interpretations, experiences and meaning. As opposed to
quantitative research, which looks for universal truths that can be
expressed in figures, qualitative results are mostly represented in words.
Reading the Mind in the Eye test the subject must try to determine the
underlying emotion of a person by looking at pictures of the photo-
graphed person’s eyes. Developed in 1997 by Simon Baron-Cohen and
colleagues to measure the Theory of Mind in adults.
Sally-Anne test neuropsychological test aimed at studying children’s are
ability to be empathetic towards other people’s thoughts. Originally
designed by Wimmer and Perner (1983) and later further developed by
Uta Frith.
Schizotypal Personality Disorder (STPD) a personality disorder, as
defined in DSM-5, with a pervasive pattern of social and interpersonal
deficiencies. Feelings of extreme discomfort with having close relation-
ships because of, amongst other things, paranoid ideation. Other char-
acteristics include social anxiety, thought disorder, eccentric
behaviour.
Social Responsiveness Scale (SRS) a screening instrument used to map
social disabilities with autism spectrum disorders.
Strange Stories (Happé) test that measures Theory of Mind, someone’s
ability to assess other people’s thoughts and feelings.
Theory of Mind the ability to get an idea of someone else’s perspective,
and the awareness that your own ideas, desires and emotions can
diverge from someone else’s. A deficient Theory of Mind has often
146 Glossary

been postulated as the core problem of autism, although this idea has
also been criticised. Many people with autism actually do develop a
Theory of Mind, albeit later than usual. A deficient Theory of Mind is
often also connected to a deficient ability to empathise. It should be
noted here that the thesis that autistic people have deficient empathic
abilities is contested.
Theory of Own Mind the ability to be aware of your own psychological
‘self’.
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 Index1

A C
ADOS-2, see Autism Diagnostic Central coherence, 7, 8, 64, 68, 69,
Observation Scale 96
Alexithymia, 101 Common variants, 6
Asperger’s syndrome, 23, 46, 48, 52, Communication Analysis, 2, 3
80, 82, 83, 122 Complex figure of Rey, 63, 64, 69
Attention Deficit Hyperactivity Context blindness, 7, 110, 137
Disorder (ADHD), 71, 82, 84 Context sensitivity, 77
Autism coach, 121–123
Autism Diagnostic Observation Scale
(ADOS-2), 63, 64, 68 D
Autism spectrum disorder (ASD), 4, 5, Depression, 40, 45, 46, 48, 54,
9, 11, 12, 24, 25, 28, 46, 48, 63, 56–58, 84, 85, 93, 101, 115, 122
68, 69, 73, 80, 82, 83, 89, 109, Dilthey, Wilhelm, 97, 130
113, 121, 123, 137, 141 DSM-IV, 4, 82
DSM-5, 4, 7, 34, 37, 46, 69, 73, 83,
133
B
Baron-Cohen, Simon, 6n14, 66
Bettelheim, Bruno, 5 E
Borderline, 70, 84, 113 Embryo selection, 2
Borderline personality disorder, 48, Empathy, 31, 32, 75, 109
56, 82, 83, 134 Epilepsy, 48

1
Note: Page numbers followed by ‘n’ refer to notes.

© The Author(s) 2018 153

K. Hens, R. Langenberg, Experiences of Adults Following an Autism
Diagnosis, https://doi.org/10.1007/978-3-319-97973-1
154 INDEX

Euthanasia, 56–58 K
Exculpating, 81 Kanner, Leo, 4, 9
Executive functions, 7, 8, 63–65, 68,
69, 96
Eyal, Gil, 9 L
Lester, Jessica, 106
Loneliness, 53, 54, 59
F Looping effect, 9, 133
Flemish Autism Association (Vlaamse
Vereniging Autisme), 12, 48, 124
Fragile-X, 5 M
Frith, Uta, 6n14, 7n15, 22, 96 Minnesota Multiphasic Personality
Inventory (MMPI), 70
MMPI, see Minnesota Multiphasic
G Personality Inventory
Gadamer, Hans-Georg, 134 Moral career, 133
Generalised anxiety disorder, 48 Murray, Stuart, 9

H N
Helping thoughts, 93, 137–142 Neurodiversity, 5
High, Inflexible Precision of NLD, see Non-verbal learning disorder
Prediction Errors in Autism Non-verbal learning disorder (NLD),
(HIPPEA), 7, 131 24, 36, 48, 72, 73, 125, 134
High Sensitive Person (HSP), 72, 83
High Sensitive Personality, 72
High sensitivity, 71, 72, 83 O
HIPPEA, see High, Inflexible Precision Obsessive Compulsive Personality
of Prediction Errors in Autism Disorder (OCPD), 72, 83
HSP, see High Sensitive Person

P
I PDD-NOS, see Pervasive
Intense World Theory, 7, 131 Developmental Disorder—Not
Interpretative Phenomenological Otherwise Specified
Analysis (IPA), 11, 12 Pentzell, Nick, 8
IQ, 4, 12, 13, 63, 72, 130 Pervasive Developmental Disorder—
Not Otherwise Specified (PDD-­
NOS), 4
J Phenomenological, 11
Justice, 36, 98 Prenatal diagnosis, 2
 INDEX 155

R T
Reading the Mind in the Eye test, Theory of Mind (ToM), 6, 8, 12, 63,
66, 74 64, 66, 68, 69, 96, 110
Responsibility, 113 Theory of Own Mind, 7
Rorty, Richard, 134 Tower of London Test, 65

S V
Schizotypal personality disorder, 48 Van de Cruys, Sander, 7
Singh, Jennifer, 106 Verhoeff, Berend, 9
Social Responsiveness Scale (SRS), 68,
75
Stigma, 133 W
Strange Stories, 66 Waltz, Mitzi, 7
Suicide, 45, 47, 57, 58, 85 Weak central coherence, 8, 69, 110
Sympathy, 32 Wisconsin Card Sorting Test, 63, 65