Book Does Autism Need a Cure?

Perspectives Book Does autism need a cure? Earlier this year, I called for an ethical fi rst described none has tackled the argued “a feeling of sympathy is debate about how biomarkers for ethics of autism head on in the way required for morality”. So Hume would autism research should be used that Barnbaum does. This book kick- have had to conclude that, if they (Community Care, Jan 14, 2009). starts the ethical debate that I think do not spontaneously empathise, Almost every month a new genetic we need. people with autism must lack a moral study of autism is published, but Barnbaum is a philosopher and so sense. By contrast, another 18th- what are we going to do with all this is well placed to consider the ethical century philosopher Immanuel Kant brave new science? One scenario— issues surrounding autism. She starts argued that to develop a personal embodied in the mission statements from the idea that, for neurological morality, “feelings of empathy are of American autism charities like reasons, people with autism are not necessary”. For Kant, all that is Defeat Autism Now! (DAN) or Cure needed is a sense of duty, expressed “Although there are many books Autism Now (CAN, which has now as imperatives. So, Kant would have The Ethics of Autism: Among merged with the charity Autism about autism, in the 66 years argued that, if a person with autism Them, but Not of Them Speaks)—is that we should use such since the condition was fi rst can understand rules (eg, treat people Deborah R Barnbaum. Indiana University Press, 2009. science to “cure” or “prevent” autism. described none has tackled the with respect and dignity), that is Pp 248. US$15·40. My own view is that I would not ethics of autism head on in the suffi cient for them to be moral. ISBN 978-0-253-22013-4. want to see biomedical autism way that Barnbaum does. This My own experience of people with research being used to prevent book kick-starts the ethical high-functioning autism or Asperger’s autism in the eugenic sense of the debate that I think we need.” syndrome is that they are certainly word, because people with disabilities not just capable of morality, but may have as equal a right to life as anyone “mental solipsists”—ie, that they even be hyper-moral, wanting all of else. Nor would I want to see autism think about their own view of the us to follow the rules in a precise way research being used to cure autism in world rather than other people’s. and to the nth degree. Some become the normalising sense of the word, This is the idea that people with the whistle-blowers when they spot because I value and respect diversity autism have diffi culties in developing the rules being broken. While many and don’t think we all need to be a “theory of mind”, that is, attributing “neurotypical” people arrive at their given treatment to conform to the mental states to others. As a result, morality via a very visceral empathic majority. In addition, autism and social interaction and communication route, responding emotionally to Asperger’s syndrome often (perhaps is confusing for them to make sense another person’s distress, other invariably) involve areas of strength— of, whereas for a typical person it is people (and this includes many with such as remarkable attention to detail, eff ortless. Mental solipsism is much Asperger’s syndrome) arrive at their the ability to focus on a small topic clearer in cases of severe autism, but moral code through a logical route for long periods, and to see repeating Barnbaum points out the related based on rules (systemising). “Treat patterns—and these human qualities diffi culties with empathy even in others as you would have them treat are not in need of treatment. For sure, adults with high-functioning autism you” is an example of a moral code there are other aspects of autism that or Asperger’s syndrome. For example, that is rule-based and can be arrived would benefi t from treatment—such she quotes Gunilla Gerland, who has at by appreciating its logic and that it as severe language delay or learning autism and describes how she was works. In this way morality can be like disability, epilepsy (when it occurs), unperturbed by the death of her mathematics: Pythagoras’ theorem gut problems, and social diffi culties— father, comparing his loss to a bowl that a²+b²=c² has a logic that works for but that is a far cry from saying we of fruit that was on the table one any right-angled triangle. Barnbaum’s should “cure” autism itself. day and gone the next. But Gerland conclusion is that because people with So I was delighted to discover says “On the other hand, it greatly autism are concerned to be good, Deborah Barnbaum’s The Ethics of disturbed me when they moved the they can therefore be moral (unlike Autism because it provides a serious furniture.” psychopaths). examination of the moral and ethical Barnbaum explores the consequ- But in a shocking section of the issues surrounding autism and ences of this mental solipsism for book she highlights how some Asperger’s syndrome. Although there people with autism. Does this leave moral philosophers, such as Martha are many books about autism, in them without the ability to be moral? Nussbaum, have argued that if the 66 years since the condition was 18th-century philosopher David Hume a person lacks the capacity for www.thelancet.com Vol 373 May 9, 2009 1595 Perspectives relationships with other people, programmes in the USA when tens so we can’t be ‘cured’. This is just the “such a life is not a life worthy of of thousands of people were forcibly way we are.” human dignity”. Barnbaum also sterilised because of their learning For some, Barnbaum’s book will be quotes Tavistock Clinic psychiatrist disabilities, doctors (presumably hard going in places, since she writes Peter Hobson who argues “the within the moral community) more for her academic colleagues autistic person is outside the moral making decisions to deny people than for practitioners, parents, policy- community, biologically human but their autonomy, in some sense makers, or people with a diagnosis. not a person in the moral sense”. That treating them as subhuman. She But this book is invaluable since it is because, for Hobson, to be a person is clear where she stands on this: starts a much-needed ethical debate. assumes not just an ability to have “Agents compromise their own Despite her attempt not to take sides what philosopher Martin Buber calls moral standing, their own claim to and to present the arguments with “I–It” relationships, but also “I–thou” membership in the moral community, clarity, to enable others to make up relationships—the ability to relate to when they disqualify others.” their own minds, my sense is that people as well as things. She then turns to the ethical issue: Barnbaum believes in what she calls But Barnbaum is uncomfortable should people with autism be cured? “autistic integrity”: the idea that with Nussbaum and Hobson’s idea of Barnbaum quotes another woman people with autism are “leading a putting people with autism “outside with high-functioning autism, life that is diff erent—in some ways the moral community”. She reminds Temple Grandin, who says: “If I could incomprehensibly diff erent—from the us that in history, placing people snap my fi ngers and be non-autistic, life led by those who are not autistic”. outside the moral community led to I would not—because then I wouldn’t Her view is one I have long shared: that the horrors of Nazi Germany, when be me. Autism is part of who I am.” people with autism deserve the same Jews, gypsies, homosexual people, Grandin says that she “thinks in respect as any other person, with the psychiatric patients, and those with pictures” and that “I would never same rights to be diff erent, and to be learning disabilities were slaughtered want to become so normal that I themselves. because they were judged not to would lose those skills”. Barnbaum merit full moral human rights. And also quotes a teenager with autism Simon Baron-Cohen she reminds us of the eugenics as saying “We don’t have a disease, [email protected] In brief Book Witness to birth days has witnessed about 3000 births— enough” labour pain relief where Birth Day begins in the Chicago including those of his two now- women are off ered nitrous oxide and hospital ward where Mark Sloan teenaged children. Sloan’s spark a host of non-pharmacological pain started his obstetrics rotation, as and wit keep us entertained while relief options. Tonya, “the fi rst woman I had ever allowing us to share in the fascination At the close of the book, Sloan touched with medical intent”, labours and awe he clearly still feels, three describes his most recent night on to deliver her third child. As the baby’s decades after the birth of Tonya’s son. call. An obstetrician pages him to the head appears and Sloan desperately His discussion of childbirth when a fetus’s heart rate becomes Birth Day: A Pediatrician wonders what to do next, his senior anaesthesia is the freshest and most irregular, but by the time he arrives, Explores the Science, the History, and the Wonder resident steps in, yanks the infant out agenda-free analysis of this topic the baby is doing fi ne “cradled in her of Childbirth “like a rabbit pulled from a magician’s I’ve seen.

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