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Towards an Ethics of Autism

Kristien Hens

Part II: Experiences of Autism

5. Difference and Disability

Texte intégral

Life is Experience – 
George Canguilhem

1In the previous chapters, we have described autism as a phenomenon for which different neurocognitive explanations may be applicable. We have also seen how autism may have had different meanings throughout history and in different cultures. For example, in the second half of the previous century, it became more widespread and associated with a cognitive disability. Today, some people still make the distinction between those autistics with a cognitive disability, who have challenges functioning autonomously (sometimes called ‘low-functioning’ or even ‘severe autism’), and those without a cognitive disability (sometimes called ‘high-functioning’). Indeed, one of the more challenging aspects of studying the ethics of autism is being confronted with fierce discussions online between some parents of autistic children and some autistic adults. Parents of autistic children sometimes reproach autistic adults, many of them neurodiversity advocates, that they cannot speak for their child: their child, so it goes, has severe challenges, needs medical help, and according to some, even a cure. Neurodiversity proponents object that their experiences can be informative and can help understand children who are perhaps intellectually disabled and do not speak. They say that even in the case of children whom people might think of as ‘severely autistic’, autism is not something to be cured, and we should not subject children to behavioural therapies such as Applied Behavioural Analysis (ABA). Some people, however, suggest that neurodiversity is all well and good for autistic people who can speak and reason. However, children unable to speak and with learning difficulties are considered much worse off and in need of therapy and treatment.

2These debates are philosophically challenging. We might ask ourselves on what basis we can say that a specific type of person is better off than others. It may be the case that verbal autistics with an average or above-average intelligence appear more ‘typical’ and better functioning than children with a much lower score on an IQ test. For example, in mainstream bioethics, scholars have often assumed that IQ and wellbeing or even happiness are intrinsically linked. However, as I shall point out, this association is not without its flaws. Also problematic is the assumption that those autistics with an average or above-average intelligence are automatically better off in terms of wellbeing and therefore should only marginally contribute to the debate about autism. The testimony from of this group of people sometimes expresses great suffering. In this chapter, I will resist the temptation to associate a good life with higher intelligence or with being able to function autonomously. This is equally so for non-verbal autistic people as for so-called ‘high-functioning’ autistics who speak for themselves: I think we cannot take it at face value that the former are more in need of ‘therapy or treatment’ than the latter. Instead, we should learn from disability studies that we must take first-person perspectives seriously and shy away from easy assumptions about wellbeing and happiness based on broad categories such as intelligence. In general, we can challenge the association between being more ‘typical’ or ‘normal’ and wellbeing, and acknowledge that advocating for and establishing a culture that accepts atypicality may bring us a long way.

  • 1 Francisco Ortega, Rafaela Zorzanelli, and Clarice Rios, ‘The Biopolitics of Autism in Brazil’, in R (...)

3Up till now, I have discussed autism in different ways. I have described it as a diagnosis on the rise, a psychiatric disorder, and a neurological reality. At the same time, autism is often called a disability. I have put aside the fact that this is not the case in all countries. In states with a robust psychoanalytic tradition, such as France and Brazil, it is often not customary to diagnose children first and then treat them: clinicians usually deem a diagnosis unnecessary to provide therapy.1 Moreover, we can distinguish between mental illness and a disability (cognitive or not): how a particular condition is perceived can have far-reaching consequences for treatment. Furthermore, because in these countries autism is often considered to be a mental illness, it is treated with psychoanalytic therapies. In places that approach it as a disability, the treatment is given with this in mind. Autistic children receive behavioural therapy, or they are offered psycho-education. Many parents, therefore, oppose psychoanalytic therapy in these countries and strive to have autism labelled as a disability. The treatment of autism in the psychoanalytic tradition is beyond the scope of this book. In Belgium, policymakers consider autism a disability, and services and autism support are dealt with in the same way as services and support for other disabilities.

Disability and Bioethics

  • 2 Julian Savulescu, ‘Procreative Beneficence: Why We Should Select the Best Children’, Bioethics, 15: (...)

4Before we return to the question of autism, it is useful to reflect on disabilities and the status that disability has in our ethical considerations. Bioethicists investigate cases related to prenatal screening, and editing and selecting in-vitro embryos. Unavoidably the question about the wellbeing of people with a disability arises here. Utilitarian thinkers such as Julian Savulescu argue that it is better to be born without a disability than with one.2 Prospective parents therefore have reason, should they have the choice, to choose an embryo without a disability. Along the same lines, one could argue that pregnant mothers, if confronted with the fact that their foetus has a chromosomal, genetic, or other abnormality that could lead to a disability such as Down syndrome, might be best advised to choose prenatal screening and termination of the pregnancy.

  • 3 John Harris, ‘One Principle and Three Fallacies of Disability Studies’, Journal of Medical Ethics, (...)
  • 4 Brian G. Skotko, and Susan P. Levine, ‘What the Other Children Are Thinking: Brothers and Sisters o (...)

5As a postdoctoral researcher, I spent some time reflecting on whether we ought to know the complete genome of in-vitro embryos, and, based on that, select the ‘best’ embryo. The existing bioethics literature extensively dealt with Savulescu’s principle of procreative beneficence. After all, who can deny that if you know that one embryo has a disability and the other one has not, it is not better to choose the latter? According to some philosophers, such as John Harris, it is even better not to let embryos with a disability be born, even if there is no embryo without a disability available.3 In these discussions, having a disability is always automatically linked with lesser wellbeing. Often this is done with reference to common sense. It seems self-evident that it is better to be born without physical or cognitive disabilities and that having such disabilities reduces the wellbeing of those involved. However, these intuitions may be misguided. Such assumptions can be tested with empirical studies. And indeed, empirical studies into people’s wellbeing in general, and more specifically, people with a disability, have been extensively conducted. Down syndrome is a standard case. Many pregnancy terminations undertaken for medical reasons happen because the foetus has trisomy-21, the extra chromosome 21 that causes Down syndrome. Concerns about the wellbeing of the child could play a role here. Nevertheless, the empirical research of Brian Skotko and others has demonstrated that people with Down syndrome do not, by definition, have lower wellbeing. Their parents or brothers and sisters are often not unhappier than the parents and siblings of children without Down syndrome.4

  • 5 Saskia L. S. Houwen-van Opstal, Merel Jansen, Nens Van Alfen, Imelda de Groot, ‘Health-Related Qual (...)
  • 6 Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (Plymouth: Rowman & Littl (...)
  • 7 I would like to add that some doctors have pointed out to me several times that they believe that t (...)

6Even more striking are the results of a study into the wellbeing of boys with Duchenne Muscular Dystrophy. Although it is clear that these boys suffer from a devastating disease, that they often become unable to walk at a young age and will die young, they report that they have a relatively high quality of life.5 I give these examples not as a plea against pregnancy termination but as an illustration that it is common to give a simplistic view in present-day bioethical discussions about what it means to have a disability. In her book, Disability Bioethics, Jackie Leach Scully has already pointed this out.6 She provides us with an explanation that bioethicists are asked to evaluate new medical technologies ethically. Hence, they have a symbiotic relationship with the biomedical world. Therefore, she states that many bioethicists use the conceptual framework of medicine to think about disabilities: they see disabilities as impairments in individuals that need fixing. Bioethicists would be best also to use insights from disability studies in their considerations.7 On the question of termination of pregnancy, this does not mean that we need to replace one straightforward answer (best to terminate) with another one. Prospective parents may have many different reasons to terminate a pregnancy of a disabled foetus. For example, in the case of Duchenne Muscular Dystrophy, they may find the idea of losing a son at a young age unbearable. What we should challenge, however, is the automatic association between disability and a lower quality of life.

Models of Disability

  • 8 Jackie Leach Scully, ‘The Convention on the Rights of Persons with Disabilities and Cultural Unders (...)
  • 9 Elizabeth Barnes, The Minority Body: A Theory of Disability (Oxford: Oxford University Press, 2016)

7When we talk about disability, often a distinction is made between the medical and the social model of disability. According to the medical model of disability, it is assumed that disability exists within the individual and that we have to try to eliminate it with medical treatments. According to the social model of disability, physical or cognitive impairments are neutral: they become a disability because of society’s lack of support. In an ideal world, impairments do not become disabilities. The Convention on the Rights of Persons with Disabilities assumes the social model and lays down the rights of people with a disability.8 They have a right to integrate into society fully and to have equal opportunity in education and labour. Still, some have criticized specific interpretations of the social model of disability. This model sometimes ignores the experience of the person with a particular impairment. The emphasis is on external social powers that render someone disabled, and there is not much attention paid to what it means to live in a specific body or with a particular mind. The term disability is also interpreted negatively: it is the negative result of the social context not being adapted to a specific person’s impairments. In her book The Minority Body, Elizabeth Barnes argues for a different view: disability is not good or bad, but value-neutral.9 You cannot say that someone, because they have a disability, is, by definition, worse off than someone else. It is, of course, possible that for some people with a disability, this disability has an impact on his or her wellbeing. However, having a disability is neutral concerning wellbeing, and having a disability can have good and bad associations. Barnes defines disability as having a minority body, a body that is different from the general norm. ‘Disability’ as a category of diverse phenomena is socially constructed; the specific disabilities are not. It is, of course, possible that you have a body that is in the minority and that this in itself can lead to oppression, stigma and lower wellbeing. Nevertheless, in the end, particular disabilities do not tell you much about the wellbeing of a person with the disability.

  • 10 Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), p. 9.
  • 11 Leni Van Goidsenhoven, Autisme in veelvoud: het potentieel van life writing voor alternatieve vorme (...)
  • 12 Van Goidsenhoven, Autisme in veelvoud.

8Maybe it is ultimately impossible to find the one right way to look at a disability. Disability scholar Leni Van Goidsenhoven argues that it is better to bring together different aspects of disability; disability is something physical or cognitive, but at the same time cultural. People with a disability form a minority and are oppressed by existing structures. Nevertheless, besides that, they are also individuals with a specific body, with strengths and challenges. That is precisely the reason why we should engage with both positive and negative experiences of people with a disability. Van Goidsenhoven refers to Alison Kafer’s book Feminist, Crip, Queer,10 and the concept of Crip Theory: an activist and at the same time theoretical view on disability. The hard word ‘crip’ is used deliberately.11 Instead of trying to situate disability in the social or the medical realm, it becomes, according to Kafer, ‘a set of practices and associations that can be critiqued, contested and transformed.’ Because we do not take for granted a fixed model to look at disabilities, disabilities and persons with disabilities can, according to Van Goidsenhoven, not be caught by fixed, unmovable, and straightforward definitions, but are open, transformable, and debatable, making room for ‘polysemous reading’ and ‘productive uncertainty’.12

  • 13 Dan Goodley and Katherine Runswick-Cole, ‘Reading Rosie: The Postmodern Dis/ Abled Child, ’ Educati (...)

9The text Reading Rosie by Dan Goodley and Katherine Runswick-Cole illustrates how different ways of looking at disability are possible and how these different discourses exist next to each other.13 The text describes, from a poststructuralist view, an eleven-year-old girl with a disability. She is ‘being read’ by way of four different discourses of disability that are juxtaposed. These discourses are the autism canon, the traditional social model of disability, the Scandinavian relational model of disability, and one filtered by the socio-cultural lens of the present-day child in the digital age. The authors wonder what these different discourses convey about Rosie. They state that it is not their aim to come to a more profound truth about Rosie. Instead, they want to make explicit how different stories about one child are possible, a child who is perhaps all too often reduced to her diagnosis and challenges.

  • 14 Dinah Murray, Mile Lesser, Wendy Lawson, ‘Attention, monotropism and the diagnostic criteria for au (...)

10Since she was three, Rosie has had an autism diagnosis as well as learning difficulties. The first reading of Rosie is based on the medical model of autism, which the authors call the autism canon. In this reading, Rosie is someone with a ‘devastating disorder’, a ‘neurological disorder’. In this reading, children such as Rosie have deficient social skills, and they are defined by problems with their language and repetitive behaviour. According to this model, we can explain Rosie’s interest in photography by her autism, through which she is more interested in technical objects than in other people. Indeed, so-called restricted interests are part of the diagnostic criteria for autism. I remember taking an online course in autism diagnosis geared at psychologists and clinical professionals. At a certain point, the instructor gave the following example: ‘if a five-year-old boy knows a few names of dinosaurs, this is normal. If a five-year-old boy knows all the dinosaurs’ names, an alarm should go off. Even more so if he is not interested in dinosaurs, but say drainpipes, and knows everything about them.’ I thought this was a somewhat restricted view of what should be considered typical interests in children. Maybe we could see the particular interest of the drainpipe-loving boy as refreshing and original. Who knows how exciting drainpipes can be! In a 2005 paper, Dinah Murray, Wenn Lawson, and Mike Lesser have called this the monotropic mind: a focus on a small number of interests at any time, therefore sometimes missing things outside of the attention tunnel.14 However, it is hard to see how having a few restricted interests is more pathological than a mind that wanders.

11The second reading in Reading Rosie is that of the social model of disability. Disability in this reading is not an individual medical disorder but the result of a disabling society that does not consider the needs of people with specific impairments. Disability is social oppression. In this reading, children with a particular disability, such as Rosie, are more often the victim of social oppression: she is being stared at when she exhibits behaviour that does not fit expectations and follows leisurely activities in a specialized centre. The third reading is that of the Scandinavian relational model of disability. This model defines disability as a mismatch between a person’s capabilities and the functional demands of the context. Disability exists in relation to the environment. A blind person is not disabled when she has to make a telephone call, and not at all in a dark environment. By looking at disability relationally, the conditions of possibility are created for empowerment: adjustments to the living environment make it possible for a disabled person to flourish. In this reading, Rosie is a happy and playful child when she is at home. If people she does not know visit, she finds that problematic: she prefers to be in a quiet and predictable environment. Her disability thus only becomes apparent when there is a mismatch between Rosie and her surroundings.

12In the last reading, the authors describe Rosie as a ‘typical child of the digital age’: at one point, one of the researchers brought a camera, and Rosie used this immediately and with much gusto. She took pictures of favourite objects and in this way she showed her interests and the things she loves. All these readings show us different aspects of what disability, in this case, autism, can mean: a lens through which your interests are interpreted, a form of social oppression, but also — in the last example — as a child with her own interests and a life-world apart from the label, with a rich family life in which she flourishes. By looking at Rosie through these different narratives, we gain a broader view of what disability can mean and how a simple view on disability, using one model only, can reduce a person to a medical disorder or the product of social oppression. If we want to understand what disability is, we should not limit ourselves to one model. Instead, we should think of these models together to grasp the complexity and polysemy of the phenomenon. In the case of Reading Rosie, it may have been good to add a further reading: the story that Rosie would tell herself about her interests and experiences. Rosie is, in the first place, an individual with her own identity and her own experiences.

Neurodiversity and Disability

  • 15 See: Robert Chapman, ‘Neurodiversity, Disability, Wellbeing’, in Neurodiversity Studies: A New Crit (...)

13Most scholars of disability studies have investigated physical disabilities, as in the book mentioned earlier by Elizabeth Barnes. The idea of a neutral deviation from the typical is also apparent in the neurodiversity movement. For a good overview and contemporary interpretation of neurodiversity, I recommend philosopher Robert Chapman’s work.15 Although the neurodiversity movement is itself diverse, and one description cannot cover all of its manifestations, neurodiversity advocates reject the idea of autism as an illness or disorder. They would probably appreciate the value-free concept of disability that Barnes proposes. Indeed, they often vehemently oppose the frequent biomedical assumption that autism is a disorder that needs to be solved, treated or cured. Still, if a person ignorant about current discussions about neurodiversity and disability visited a large conference for autism researchers such as INFAR, it would be hard to shake the impression that autism must be a disease. Researchers refer to their autistic participants with the term ‘patients’, genetic causes are actively sought after, and mouse models are created to track these causes and develop pharmacogenetic treatments. However, is ‘illness’ the proper term to use when we talk about autism?

  • 16 Christopher Mole, ‘Autism and “Disease”: The Semantics of an Ill-Posed Question’, Philosophical Psy (...)

14Philosopher Christopher Mole has argued that whether autism is a disease is an ill-posed question. We should not try to answer it with a yes or a no; we should not ask the question. He admits that classifying autism as a disease has certain advantages. Such classification can contribute to the fact that the everyday challenges that autistic people encounter are taken seriously. It can also mean that we absolve people with a diagnosis of autism for behaviour that might be socially awkward. Autism then functions as a mitigating circumstance. Nevertheless, if we use the term ‘illness’ when talking about autism, we bundle together the mitigating circumstances and the search for a cure semantically. Such a move might be the right thing to do for somatic, non-psychiatric conditions, Mole argues, but not for psychiatric conditions. Therefore, he concludes, the question of whether autism is an illness should not be posed at all because, if you do it, you combine a set of norms that cannot properly be connected.16

  • 17 Andrew Fenton and Tim Krahn, ‘Autism, Neurodiversity, and Equality beyond the “Normal”’, Journal of (...)
  • 18 We can even state, as a neurologist once said to me when he heard me use the words neurotypical and (...)

15In their article ‘Autism, Neurodiversity and Equality Beyond the Normal, ’ Andrew Fenton and Tim Krahn investigate the concept of neurodiversity.17 They point out that in general, and also in nature, neurological variation is far more common than is generally assumed, and this does not always lead to specific challenges.18 On the contrary, such challenges are caused mainly by external factors. Hence we should, according to the authors, reconceptualise high-functioning autism as a normal variation. They therefore, conclude the following:

From these observations we can conclude that, unless the relevant deficits qualify as dysfunctions (i.e., are maladaptive), the given cognitive and accompanying neurological differences—even when these are associated with deficits in skilled behaviour—are not ordinarily grounds for pathologizing a certain way of engaging with the world.

  • 19 ‘Neurotypical’ in the context of autism and other phenomena, is an adjective used to refer to a per (...)

16Fenton and Krahn suggest that this may be difficult for other types of autism (so-called ‘low-functioning autism’). Still, they indicate that in these cases too, it is perhaps possible to view differences as neutral. Reconceptualising autism as a neutral difference has a number of consequences: autistic people do not, by definition, need to be ‘cured’, and autism is not necessarily synonymous with suffering. We should look beyond our understanding of what it means to lead a good life and not only use the ‘neurotypical’19 standard. Furthermore, the authors conclude that persons diagnosed with autism should decide what they will accept as therapy and whether they need treatment.

  • 20 Pier Jaarsma and Stellan Welin, ‘Autism as a Natural Human Variation: Reflections on the Claims of (...)

17Piers Jaarsma and Stellan Welin have elaborated on the concept of autism as a neutral difference in several papers.20 For them, autism, and then mainly in the form of Asperger syndrome, is a neutral genetic difference involving average or high intelligence. Just like homosexuality, Asperger syndrome is not an illness or a medical problem that has to be cured, but a form of diversity and a part of someone’s identity that we have to accept. Although this is a positive and emancipatory approach, there are some difficulties with it. Just as with a purely medical approach to autism, this approach stresses biological difference: autism as a different brain and different genes. It is a difference in the individual, not a mismatch between the individual or a disorder at a specific moment in the individual’s development. Moreover, they also distinguish between ‘high-functioning’ and ‘low-functioning’ autism when discussing how we appreciate autism as a neutral identity. As I will discuss later on, this distinction may not hold.

Autism and Identity

18Perhaps merely pointing at intrinsic and natural causes of difference, be that difference neutral or not, does not adequately reflect how complex autism is, nor the fact that it is also an identity that we can accept or reject. Moreover, such a purely individual-biological approach always carries the risk that people will see autism as a medical problem to be cured. Biology in itself is not proof that something is either a neutral or a pathological variant. The comparison with homosexuality, as suggested by Jaarsma and Welin, is promising, however. Homosexuality has been viewed for an extended period in western culture as a moral problem. Some people who tend to fall in love with people of the same gender welcomed the mention of homosexuality in the diagnostic handbook. If it is an innate condition, people cannot blame you for being gay. This is reminiscent of how an autism diagnosis sometimes functions. If you receive a diagnosis, you no longer have to comply with unattainable normality standards. The diagnosis objectively determines that the person diagnosed is different from other people and that they cannot transcend this difference through effort.

19Fortunately, homosexuality has been removed from the DSM for quite some time. It is now something with which one identifies, a part of one’s own identity, not something a psychiatrist detects or diagnoses. However, with Michel Foucault, we can acknowledge that it is precisely the idea of belonging to a minority that makes homosexuality function as an identity. We could imagine a world where sexual preference does not even need a name because it is considered unimportant and indeed not of moral relevance. Perhaps we can also imagine a world where specific cognitive differences do not need a name because people do not consider them relevant or they are not associated with challenges. Still, this is not what many neurodiversity activists would argue for. Most of them do not often propose that autism, as a term, should eventually disappear when society has changed to accommodate their needs better. Perhaps this is because they consider autism to be an integral part of their own identity. Nevertheless, it is precisely the idea of identity that risks being buried by an approach that puts too much stress on the biological aspects.

20Suppose autism is a neutral neurological and genetic difference. In that case, there is no reason why we should not determine this as early as possible and communicate this to the child and her parents. This is indeed the direction many autism professionals would want to take. They often assume that early detection of autism is best practice, not (only) because this means it is possible to intervene early, but also because the child can be understood and supported as early as possible. However, if we introduce the comparison with homosexuality, it is not often suggested that we should detect this as early as possible. Although it is generally assumed that homosexuality is something with which you are born, and it is for the most part ‘in your genes’, not many people suggest that we should screen children as early as possible, should this be possible. Such an approach could, just as is argued in the context of autism, have some advantages. Early on, children would not have to be confused about their own sexual identity during adolescence because it would have already been objectively established when they were small. Still, this approach is not without problems.

21On the one hand, this has to do with the fact that sexual orientation may not play a significant role in young children’s lives. On the other hand, it also may have to do with the fact that we probably believe that sexual orientation is something that we should detect about ourselves and that we should assimilate into our thinking about ourselves, even though it is, of course, biologically based. Perhaps the same is true for autism. Many children are diagnosed at a young age, which can help the parents and the children themselves. But suppose autism is also an identity, besides a biological reality. In that case, this may also mean that forming, accepting, and assimilating this identity is something that the autistic person should do herself. It is not merely knowledge about one’s biology. This, at least, suggests that adolescents or adults who were diagnosed as young children could redefine what autism means to them. Simply because a specific characteristic or behaviour is also in your biology, does not mean that it cannot simultaneously be an identity. Perhaps we can consider biology and identity together, without reducing one to another.

22Of course, we can also ask ourselves whether we can, in all cases, think of autism as a neutral difference. It may be helpful, using the analogy with homosexuality, to imagine a society where autistic people are not considered to be different and do not need a label or diagnosis. The question remains whether this is possible for all autistic people. Some autistic people themselves state that their way of being is the cause of suffering. This suffering may even be intrinsic to their functioning regardless of the support they receive. For example, some autistic people have testified how sensory overload or sleeping problems impact their wellbeing and how they believe this is something that any support cannot help. Although most autistic people reject a cure for autism, as it is tightly linked to their identity, some would welcome a medical solution for some of its symptoms. If we only give voice to autistic people who do not experience this, that could also be considered a case of epistemic injustice, a concept that I shall describe further in the next chapter.

  • 21 Jennifer C. Sarrett, ‘Biocertification and Neurodiversity: The Role and Implications of Self-Diagno (...)

23The discussion around self-diagnosis is also interesting. Can people diagnose themselves as autistic, just as we do not need a doctor to identify as queer? This question has led to much controversy in the autistic community. Some argue that autism has to be determined by medical professionals because only they have the relevant scientific knowledge. Those who advocate for self-diagnosis do so for several reasons. Firstly, in many parts of the world, an official diagnosis remains unattainable, and many people do not have the resources to pay for such diagnoses. Secondly, they wish to counter the medical view of autism, and stress the expertise of those living with the condition. Accordingly, they consider autism more of a neurological identity than a medical diagnosis, an identity that you can discover and define for yourself without needing a doctor’s help.21

  • 22 David DeVidi, ‘Advocacy, Autism and Autonomy’, in The Philosophy of Autism, ed. by Jami L. Anderson (...)

24Still, if we talk about autism as a specific identity, one that perhaps entails particular challenges in a society that is not always accepting, how does this relate to people who experience severe challenges because of their autism, or to parents of children with severe behavioural problems? Jaarsma and Welin explicitly describe the situation of people with so-called ‘high-functioning autism’ and Asperger syndrome and state that those autistic people who do not belong in these categories may have a disability that cannot be thought of as a neutral variant. They, therefore, oppose the fact that in DSM-5, Asperger syndrome is no longer a separate diagnosis and falls under the umbrella of Autism Spectrum Disorder. However, narrowly defining autism as a ‘different but neutral identity’ only for well-spoken people with a high IQ test score may be a bit short-sighted. In the paper ‘Advocacy, Autism and Autonomy’, David DeVidi questions the distinction between ‘high-functioning’ and ‘low-functioning’ autistics. He thinks it is wrong that if people talk about the autonomy of autistic persons, they mostly only deal with the former. Many autistic persons do not use oral language, and we often overlook their point of view. Perhaps we assume too quickly that those who do not speak, or who exhibit behaviour that is not what we are accustomed to are not autonomous at all.22

  • 23 Raffaele Rodogno, Katrin Krause-Jensen, & Richard Ashcroft, ‘ “Autism and the good life”: A new app (...)
  • 24 Ingrid Robeyns, ‘Conceptualising Well-Being for Autistic Persons’, Journal of Medical Ethics 42: 6, (...)

25Raffaele Rodogno, Katrin Krause-Jensen and Richard Ashcroft have discussed in their paper ‘Autism and the Good Life’ that it may very well be the case that some autistic people do not conceive of wellbeing in the same way non-autistic people do. Therefore, they advocate an autism-sensitive or neurodiverse-sensitive epistemology of wellbeing.23 Ingrid Robeyns has argued in her paper ‘Conceptualizing wellbeing for autistic persons’ that a capabilities approach to autism, which looks at the real opportunities that society should offer autistic people, is promising, provided that the lived experiences of autistic people are taken into account, and that conflicts between the capabilities of autistics and those of their carers are avoided.24 We may indeed not have enough knowledge about what it means to have an intellectual disability or be less autonomous. Many of the conclusions we draw are based on our own experiences. We do not have sufficient data from autistic people who cannot use oral language to talk about their own experiences and what they value in life. Does this automatically mean that autism is not an identity for them but an illness? Or even an ill identity? One of the significant challenges of the ethics of autism is that it will have to incorporate the experiences and wishes of those who do not readily talk about these things. Empirical studies with non-verbal autistic participants into what it means to be autonomous and its relationship to wellbeing are long overdue.

26In this chapter, I have described different meanings of disability and introduced the neurodiversity approach. I have argued that we cannot subdivide autistic people based on criteria of functioning alone to draw ethical conclusions. Indeed, philosophers and ethicists need to look very carefully at their intuitions regarding concepts of autonomy and what it means to lead a good life. We must think beyond our own experiences as trained intellectuals. We may define autism, in all its forms, perhaps using an analogy with Elizabeth Barnes’ minority body, as a minority brain. In this way, we do not have to deny that some autistic people suffer from some aspects related to autism. Nevertheless, we also acknowledge that this does not necessarily have to be so. Simultaneously, a poststructuralist approach such as Reading Rosie demonstrates that people with specific disabilities can always ‘be read’ in different ways, using various stories that can be juxtaposed but do not have to annihilate one another. The different meanings and dimensions of the concept of autism can then appear as in a kaleidoscope: each time we look, it is different but equally valid. Part of this endeavour is taking the experiences of autistic people seriously. In the next chapter, I shall describe how failing to do so is an example of epistemic injustice.


1 Francisco Ortega, Rafaela Zorzanelli, and Clarice Rios, ‘The Biopolitics of Autism in Brazil’, in Re-Thinking Autism. Diagnosis, Identity and Equality, ed. by Katherine Runswick-Cole, Rebecca Mallett, and Sami Timimi (London and Philadelphia: Jessica Kingsley Publishers, 2016), pp. 19–19.

2 Julian Savulescu, ‘Procreative Beneficence: Why We Should Select the Best Children’, Bioethics, 15: 5–6 (2001), 413–26; Julian Savulescu and Guy Kahane, ‘The Moral Obligation to Create Children with the Best Chance of the Best Life’, Bioethics, 23 (2009), 274–90,

3 John Harris, ‘One Principle and Three Fallacies of Disability Studies’, Journal of Medical Ethics, 27: 6 (2001), 383–87,

4 Brian G. Skotko, and Susan P. Levine, ‘What the Other Children Are Thinking: Brothers and Sisters of Persons with Down Syndrome’, American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C (2006), 180–86; Brian G. Skotko, Susan P. Levine, and Richard Goldstein, ‘Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers’, American Journal of Medical Genetics. Part A, 155A (2011), 2335–47; Brian G. Skotko, Susan P. Levine, and Richard Goldstein, ‘Self-Perceptions from People with Down Syndrome’, American Journal of Medical Genetics. Part A, 155A (2011), 2360–69.

5 Saskia L. S. Houwen-van Opstal, Merel Jansen, Nens Van Alfen, Imelda de Groot, ‘Health-Related Quality of Life and Its Relation to Disease Severity in Boys with Duchenne Muscular Dystrophy: Satisfied Boys, Worrying Parents — a Case-Control Study’, Journal of Child Neurology, 29: 11 (2014), 1486–95,

6 Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (Plymouth: Rowman & Littlefield, 2008).

7 I would like to add that some doctors have pointed out to me several times that they believe that this interpretation of medicine and medical is too one-sided. They do not only see themselves as professionals who localize illnesses or disabilities in individuals, and that pathologise individuals. Considering individuals in their broader context is also an integral part of the medical profession.

8 Jackie Leach Scully, ‘The Convention on the Rights of Persons with Disabilities and Cultural Understandings of Disability’, in Disability and Universal Human Rights: Legal, Ethical and Conceptual Implications of the Convention on the Rights of Persons with Disabilities, ed. by Joel Anderson and Jos Philips (Utrecht: Netherlands Institute of Human Rights (SIM), 2012), pp. 71–83.

9 Elizabeth Barnes, The Minority Body: A Theory of Disability (Oxford: Oxford University Press, 2016).

10 Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), p. 9.

11 Leni Van Goidsenhoven, Autisme in veelvoud: het potentieel van life writing voor alternatieve vormen van subjectiviteit (Antwerp: Maklu, 2020).

12 Van Goidsenhoven, Autisme in veelvoud.

13 Dan Goodley and Katherine Runswick-Cole, ‘Reading Rosie: The Postmodern Dis/ Abled Child, ’ Educational and Child Psychology, 29: 2 (2012), 53–66.

14 Dinah Murray, Mile Lesser, Wendy Lawson, ‘Attention, monotropism and the diagnostic criteria for autism’, Autism 9: 2 (May 2005), 139–56.

15 See: Robert Chapman, ‘Neurodiversity, Disability, Wellbeing’, in Neurodiversity Studies: A New Critical Paradigm, ed. by Nick Chown, Anna Stenning, Hanna Rosquvist (London: Routledge, 2020), pp. 57–72; Robert Chapman, ‘The Reality of Autism: on the metaphysics of disorder and diversity’, Philosophical Psychology (2019), 799–819; Robert Chapman, ‘Neurodiversity Theory and its Discontents: Autism, Schizophrenia, and the Social Model’, in The Bloomsbury Companion to the Philosophy of Psychiatry, ed. by Serife Tekin, Robyn Bluhm (London: Bloomsbury, 2019), pp. 371–90.

16 Christopher Mole, ‘Autism and “Disease”: The Semantics of an Ill-Posed Question’, Philosophical Psychology, 30: 8 (2017), 1126–40,

17 Andrew Fenton and Tim Krahn, ‘Autism, Neurodiversity, and Equality beyond the “Normal”’, Journal of Ethics in Mental Health, 2: 2 (2007), 1–6.

18 We can even state, as a neurologist once said to me when he heard me use the words neurotypical and neurodiverse, that all people are neurologically different from each other. By using these terms we introduce a difference that can no longer be proven purely based on brains. It is the users of these terms, not the brains themselves, that define what can be called diverse and what typical.

19 ‘Neurotypical’ in the context of autism and other phenomena, is an adjective used to refer to a person with an average neurological or psychological development, without a diagnosis of autism, ADHD, Tourette or a learning disability.

20 Pier Jaarsma and Stellan Welin, ‘Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement’, Health Care Analysis, 20: 1 (2012), 20–30; Pier Jaarsma and Stellan Welin, ‘Human Capabilities, Mild Autism, Deafness and the Morality of Embryo Selection’, Medicine, Health Care and Philosophy: A European Journal, 16: 4 (2013), 817–24.

21 Jennifer C. Sarrett, ‘Biocertification and Neurodiversity: The Role and Implications of Self-Diagnosis in Autistic Communities’, Neuroethics, 9: 1 (2016), 23–36,

22 David DeVidi, ‘Advocacy, Autism and Autonomy’, in The Philosophy of Autism, ed. by Jami L. Anderson and Simon Cushing (Lanham: Rowman & Littlefield, 2013), pp. 187–200.

23 Raffaele Rodogno, Katrin Krause-Jensen, & Richard Ashcroft, ‘ “Autism and the good life”: A new approach to the study of well-being’, Journal of Medical Ethics, 42: 6 (2016), 401–08.

24 Ingrid Robeyns, ‘Conceptualising Well-Being for Autistic Persons’, Journal of Medical Ethics 42: 6, (2016), 383–90.


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