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Towards an Ethics of Autism

Kristien Hens

Prologue: Dynamics and Ethics of Autism

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1This is a book about the meanings, experiences and dynamics of autism.

  • 1 I have put ‘risk’ between quotation marks here, as I do not consider autism to be something that yo (...)

2My initial interest in autism began ten years ago. As a bioethicist who had written a PhD on pediatric biobanks, I was interested in the ethics of genetic research and genetic diagnostics of autism. These practices raise several questions in traditional biomedical ethics, such as what genetic findings should genetic counsellors convey to their clients, and are genetic ‘risk’ factors1 for autism a good reason to opt for reproductive techniques such as in vitro embryo testing? Moreover, back in those days, and still today, public discourse on autism often centred around whether or not there are too many diagnoses of autism. Children with an autism diagnosis, previously scarce, were now to be found in every classroom. Some commentators have argued that this reflects the way that we pathologise and medicalise atypical behaviour. At the same time, parents of autistic children have often criticised this view, as they consider it a denial of the genuine challenges they and their child face. I soon realised that it is impossible to answer these ethical questions without reflecting carefully on the concept of autism itself. It seemed self-evident that when investigating questions about autism, we should first identify precisely what we mean by it. If we suggest that there are now too many diagnoses, this might imply that we think that some of the children currently diagnosed do not actually have autism, and that diagnostic practices should be more stringent. If we argue that autism is something that people can choose to prevent through reproductive techniques, we need to set the record straight on what is being prevented.

  • 2 See for example Roy Richard Grinker, Unstrange Minds: Remapping the World of Autism (Basic Books, 2 (...)

3When we ask ourselves what it would look like to do good in relation to any subject, and more specifically, what good clinical practice is, we first need a notion of what we are talking about. When thinking about autism and psychiatric diagnosis in general, this is a complex task. The ontological status of psychiatric diagnosis is the subject of fierce debate, and autism in particular is much discussed. However, this is not primarily a book about the history of autism. Scholars have written many books on this topic,2 and those looking for an overview of autism and its history can consult the resources listed in the footnotes.

  • 3 Lorcan Kenny et al., ‘Which Terms Should Be Used to Describe Autism? Perspectives from the UK Autis (...)

4In this book, I shall draw up an approach to conceptualizing autism that I think has ontological and ethical benefits, without attempting to close down the discussion about the essence of autism. I will use the term autism rather than the official and widely used Autism Spectrum Disorder (ASD), as the latter only covers some of the many meanings of autism. The reader should also be aware that I write this book from a Belgian perspective. In Belgium, diagnosis is still an essential first step in searching for answers and solutions related to autism, both in children and adults. Clinicians here do not often prescribe extensive behavioural therapies such as Applied Behavioural Analysis (ABA), which are contested by many autistic people and which raise ethical questions of their own. I will therefore only dwell on them sporadically. In Belgium, a diagnosis is generally followed by support and services in school or the workplace and psychoeducation about autism. In this book I use the terms ‘autistics’ and ‘autistic persons’, rather than ‘persons with autism’, as the former is preferred by autistic people, at least in English-speaking countries.3

5Autism professionals often talk about autism as something that is heterogenous, a spectrum. This suggests that autism can manifest itself in many different ways. For example, some autistic people have cognitive disabilities, and others have cognitive strengths. Some autistic people do not use verbal language, whereas others are comfortable with oral communication. Still, ‘heterogeneity’ or ‘spectrum’ suggests that autism itself is one thing. Over the years, I have acknowledged that autism is a multi-layered concept. It is polysemous. What a child psychiatrist means when they talk about autism can be something different from what a cognitive scientist means. It may be something different again from what it means for the autistic person.

  • 4 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (Fifth Ed.)(...)

6In order to study the ethics of the genetics of autism, I first talked to several child psychiatrists. From their perspective, one important dimension of autism is that it is a psychiatric diagnosis based on assessing behaviour and functioning. ‘To have autism’, in this sense, means that you satisfy the criteria of a diagnostic manual, that a qualified diagnostician assesses the behaviour of the person in question through the lens of a behavioural diagnosis and that the person experiences sufficient impairment in day-to-day functioning to receive a diagnosis. The most frequently used diagnostic manual is the DSM (Diagnostic and Statistical Manual of Mental Disorders), currently in its fifth edition. For autism, the main difference between DSM-IV and DSM-5 is the dyad of behaviours in the latter, as shown in Table 1.4 In DSM-IV, this was still a triad: it listed communication and social interaction as separate categories. DSM-5 gathers the earlier diagnoses of Asperger syndrome and PDD-NOS (Pervasive Developmental Disorder — Not Otherwise Specified) and some other conditions under ‘Autism Spectrum Disorder’. Moreover, the authors of the DSM-5 have tried to approach the diagnosis in a more multi-dimensional way: different people with an autism diagnosis can exhibit a particular behaviour to a greater or lesser degree. Each characteristic might manifest at different levels of severity.

7 This dimensional approach does not take away from the fact that the diagnosis itself is still categorical: you either have autism or you do not have it; you cannot have it somewhat. We might ask ourselves how far a dimensional approach is compatible with the idea of a spectrum. A spectrum suggests a gradual transition between different types. In contrast, a dimensional system indicates that different people can have various aspects to a greater or lesser degree, and are difficult to pin down on a gradient. The Canadian philosopher of science Ian Hacking, whom we shall meet again in chapter ten, prefers to speak about a manifold.5

8In the DSM-5, one of the criteria that must be fulfilled in order to qualify for a diagnosis of autism is that ‘Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning’. How much someone experiences such impairment can depend on properties intrinsic to the individual. For example, your IQ can be an asset or it can make certain symptoms more challenging. How much you suffer from sensory hypersensitivity can depend on how your brain functions. The level of dysfunction also depends on the context. For example, a person in a quiet and structured environment may perform better than someone in a chaotic environment.

9Moreover, functioning is dependent on the values of both the assessor and the assessed. Specific characteristics of one’s life, such as not having many friends or having a preoccupation with certain topics, might be considered dysfunctional from an outsider’s perspective. Nevertheless, the person may be perfectly happy. In this book, I do not use the frequently used labels ‘high-functioning’ (or ‘mild’) autism or ‘low-functioning’ (or ‘severe’) autism. These terms, first of all, presuppose that we can quickly grasp the essence of autism and that, based on this essence, you can decide whether it is more or less present. For a phenomenon such as autism, this might never be possible. Moreover, these terms suggest that the challenges of the ‘high-functioning’ autistic person—often associated with the stereotypical image of the highly gifted person with Asperger syndrome—are less than those of the person with an intellectual disability. If we consider the experiences of autistic persons with a wide range of characteristics, these subdivisions may turn out to be naive and even discriminatory.

10 If the DSM-5 is strictly followed, someone who satisfies all behavioural criteria but who can successfully integrate these characteristics into their life without experiencing impairments in their everyday life will not qualify for a diagnosis of autism. This implies that, in the context of scientific research, one could screen a population for autistic characteristics, but the appearance of such characteristics would not straightforwardly mean that a person should be diagnosed with autism in the clinical sense. Autism or Autism Spectrum Disorder is therefore a clinical diagnosis based on assessing what is best for a person with a particular need for clinical help.

  • 6 Johnny L. Matson, Handbook of Assessment and Diagnosis of Autism Spectrum Disorder (New York: Sprin (...)

11Besides the DSM, there are other classificatory systems such as ICD-10, the classificatory system for diseases created by the WHO (World Health Organization). The latter also mentions challenges in social functioning and communication, as well as restricted interests, as characteristics of autism. Diagnosticians working with either system use instruments for behavioural diagnoses, such as ADOS-2 (Autism Diagnostic Observation Scale), to measure whether individuals satisfy the diagnostic criteria.6 The DSM further mentions that autistic behaviour has to be present early in development to qualify for a diagnosis, whereas ICD-10 states that autism lasts throughout a person’s lifetime. They both mention that there is no cure, but treatment can help. They also state that treatments include behaviour and communication therapies and medicines to control symptoms, and that starting treatment as early as possible is important. The emphasis in ICD-10 on the fact that autism is quasi-innate and lifelong is fascinating: in chapter one, we shall describe how one of the early investigators of autism, Hans Asperger, stated this, but that another early investigator, Leo Kanner, suggests in a 1943 paper that some evolution is possible. Still, this emphasis on the innate and lifelong nature of autism indicates that it is different to—perhaps even more real than—a mere psychiatric diagnosis or a clinical presentation that we use to describe the challenges of a child or adult to guide further treatment and support. Autism as an idea seems to refer to a particular neurobiological reality. It looks as if autism is less susceptible to change than a mood disorder such as depression. Maybe autism is even an atypical way of being in the world, which is, in principle, equally as good as what is considered the typical or even normal way. Perhaps, when we think about autism, we more readily conjure up this more essentialist meaning, rather than the clinical meaning.

  • 7 Kristien Hens and Raymond Langenberg, Experiences of Adults Following an Autism Diagnosis (Cham: Pa (...)

12This second dimension of autism, that of a neurobiological reality, is apparent in the many research projects that seek to find the cause of autism. Taking a clinical diagnosis as a starting point, they seek to find the underlying gene or neurological functioning to explain autistic behaviour. This approach is not only popular with researchers, but autistic people also often acknowledge that they consider autism to have a biological explanation. Around 2016, researcher Raymond Langenberg and I conducted a phenomenological study about the meaning of a diagnosis of autism for adults.7 We interviewed twenty-one people about their recent diagnosis. We asked them how they experienced the diagnostic process and their lives before and after the diagnosis. We had noticed how—after a long period of feeling different and often of suffering—they welcomed the diagnosis. Throughout their lives, some of our respondents had received several other diagnoses; for example, borderline personality disorder (this was more common among the women) or obsessive-compulsive personality disorder. Many felt, however, that the diagnosis of autism was the correct one and corresponded to who they were. Some pointed out the importance of finally knowing that their challenges related to how their brain functioned, as this meant these challenges would not be overcome if they simply tried hard enough. This realisation gave them peace of mind: such an effort had cost many of them a great deal of energy without much benefit. At the same time, they sometimes struggled with the reductionist implications of the diagnosis of autism, and its neurobiological status. They often felt that they were more than what was implied by the label and what it caused some of the people around them to assume.

13Our conclusion in this study was that autism as a concept worked for the people we interviewed. They experienced autism as real and situated in biology, unlike a personality disorder (such as borderline personality disorder), as people consider these to be mental disorders. Simultaneously, autism is heterogeneous to such an extent that people who are diagnosed do not have to coincide entirely with the diagnosis. People can pick out those aspects with which they identify. It seems that it is the idea that autism is real, in your brain and your genes, that allows people to accept it as a diagnosis. What we have learned in our research, by talking to people with a diagnosis of autism, with psychiatrists and with other autism professionals, is that autism is indeed real as a shared experience, as something that can be known as a phenomenon.

14This book explores three central themes in thinking about autism that are ethically relevant. The approach is inspired by Karen Barad’s ethicoonto-epistem-ology: the idea that a phenomenon cannot be separated from how we know and study it. This, in turn, is inextricably linked with ethical practice, which should never be a mere afterthought once the research has been done. This book, therefore, does not give ready-made answers to the ethical questions posed in the first paragraph. Instead, I hope to demonstrate that what we know and how we know things matters. I offer a way of looking at autism that may inspire ethical practices.

15The first theme is that of the many meanings of autism. In part one, I shall describe different layers of meaning and their implications for the ethics of autism. The aim is not to reduce different dimensions to one true meaning but to engage with uncertainties inextricably linked to autism. Chapter one examines two seminal writings on autism, by Leo Kanner and Hans Asperger, and describes how, even in these writings, autism had different meanings. Chapter two tackles the issue of psychiatric diagnoses and what it means if someone is considered to be ‘’psychiatrically ill’. Chapter three presents some cognitive explanatory models and their implications for meta-ethics and applied ethics. In chapter four, I examine sociological explanations for the rise and expansion of autism.

16In part two, we shall investigate the importance of experience in understanding a phenomenon such as autism. This is inspired by standpoint epistemology, the idea that knowledge arises from a social position. Chapter five explores different models of disability and their application to autism. Chapter six introduces the concept of epistemic injustice and how many people have not taken the accounts of autistic people seriously for a long time. In chapter seven, I present some ideas from our interview study mentioned above. Chapter eight is an interlude about experiences of time and autism.

17A recurrent theme in the book and discussions about autism, in general, is the importance of biology, more specifically of genes and neurology. Biology makes a phenomenon such as autism appear more concrete, less imagined. Simultaneously, associating something with genes or neurology also risks a reductionist and deterministic interpretation, which can lead to stigma. In part three, I pry apart the link between biology and such reductionism and suggest ways to look dynamically at biology. I formulate an alternative to, on the one hand, reductionist biological and cognitive explanations, and on the other hand, approaches that consider autism to be a mere social construct or even a fabrication. Chapter nine describes the dynamics of diagnoses, using, amongst others, the concept of looping effects devised by the philosopher of science Ian Hacking. Chapter ten contains descriptions of dynamic models of biology and human minds. Chapter eleven investigates the impact of ideas of genetics in the context of autism. In the epilogue, I suggest how the ideas presented in this book can shed new light on ethical questions surrounding autism.

Table 1: DSM-5 criteria for autism8

  • 8 DSM-5, p. 109–10.

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history.
A1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
A2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
A3. Deficits in developing, maintaining, and understandings relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absences of interest in peers.
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least 2 of 4 symptoms currently or by history.
B1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
B2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food everyday).
B3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or preservative interest).
B4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/ temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
C. Symptoms must be present in the early developmental periods (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual development disorder) or global development delay.


1 I have put ‘risk’ between quotation marks here, as I do not consider autism to be something that you risk. As I shall argue in chapter five, I consider disability to be neutral with regards to its appreciation. In my own writings, I use ‘elevated likelihood’.

2 See for example Roy Richard Grinker, Unstrange Minds: Remapping the World of Autism (Basic Books, 2008); Majia Holmer Nadesan, Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social (London; New York: Routledge, 2005); The Autism Matrix: The Social Origins of the Autism Epidemic, ed. by Gil Eyal (Cambridge, UK; Malden, MA: Polity, 2010); Bonnie Evans, The Metamorphosis of Autism: A History of Child Development in Britain (Manchester: Manchester University Press, 2017); Mitzi Waltz, Autism. A Social and Medical History (Basingstoke: Palgrave McMillan, 2013); Anne McGuire, War on Autism: On the Cultural Logic of Normative Violence (Ann Arbor: University of Michigan Press, 2016); Chloe Silverman, Understanding Autism: Parents, Doctors, and the History of a Disorder (Princeton: Princeton University Press, 2011); Steve Silberman, Neurotribes: The Legacy of Autism and How to Think Smarter about People Who Think Differently (Crows Nest: Allen & Uwin, 2015).

3 Lorcan Kenny et al., ‘Which Terms Should Be Used to Describe Autism? Perspectives from the UK Autism Community’, Autism, 2015,

4 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (Fifth Ed.) (Arlington: American Psychiatric Publishing, 2013).

5 Ian Hacking, ‘Humans, Aliens & Autism’, Daedalus, 138: 3 (2009), 44–59,

6 Johnny L. Matson, Handbook of Assessment and Diagnosis of Autism Spectrum Disorder (New York: Springer International Publishing, 2016); Adam McCrimmon and Kristin Rostad, ‘Test Review: Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) Manual (Part II): Toddler Module’, Journal of Psychoeducational Assessment, 32: 1 (2014), 88–92,

7 Kristien Hens and Raymond Langenberg, Experiences of Adults Following an Autism Diagnosis (Cham: Palgrave Macmillan, 2018).

8 DSM-5, p. 109–10.


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