Experiences of Adults Following an Autism Diagnosis

Kristien Hens, Raymond Langenberg

• Publisher: Palgrave Pivot
• Year: 2018
• Print ISBN:
  9783319979724
• eBook ISBN:
  9783319979731
• Topic: Philosophy
• Subtopic: Critical Theory

This book explores adult experiences of autism diagnosis. Focusing on the experiences of 21 interviewees, the structure of the book mirrors the seven stages undergone upon diagnosis, and raises important questions about modern society and the self, amidst this life-changing news. Analysing a broad range of empirical interview data including adults who had experiences of other diagnoses, and adults who seemed to function normally before their autism diagnosis, the authors use these stories to examine how autism diagnosis can be extremely important and helpful, but also generate a great deal of negativity.

Illuminating a range of testimonies that have previously been kept in the shadows, this book will not only appeal to students and scholars of autism in adults, but also to practitioners as well as adults who have been diagnosed with autism.

© The Author(s) 2018

Kristien Hens and Raymond LangenbergExperiences of Adults Following an Autism Diagnosishttps://doi.org/10.1007/978-3-319-97973-1_1

Begin Abstract

1. Introduction

Kristien Hens¹ and Raymond Langenberg²

(1)

Department of Philosophy, University of Antwerp, Antwerp, Belgium

(2)

Diversity - Campus Gelbergen, Hoeleden, Belgium

Kristien Hens (Corresponding author)

Raymond Langenberg

Abstract

The authors are Kristien Hens (University Professor in Ethics) and Raymond Langenberg (Management Consultant). The latter is writing 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 outline of the methodology they used for this project.

Keywords

AutismDimensionsDefinitionPhenomenologyExperience

End Abstract

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 questions 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 project 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.

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 conventional 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 literature 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 business, philosophy and societal issues (Cahiers Campus Gelbergen). The people 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 philosopher 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 (...) understanding, changing myself gradually during the conversation, the experience, 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 how autistic people handle social situations may be more productive than holding on to a diagnosis that says that social situations can cause problems 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 usually 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 ‘taking someone into account’.

From his practice as an andragogue (social sciences), Raymond Langenberg is working on a longitudinal study of the meaning of diagnostics. 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 testing instruments has already been accepted as a formal diagnostic device. 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 characterised by problems with communication and social kills on the one hand, and repetitive behaviours...

Table of contents

• Cover
• Front Matter
• 1. Introduction
• 2. Being ‘Different’
• 3. Perspectives on Suffering
• 4. The Experience of Being Tested
• 5. Autism as a Way to Hold Your Own
• 6. The (In)ability to Self-Reflect
• 7. To Challenge or to Accept
• 8. Perspectives on the Future
• 9. Afterthoughts
• Back Matter