Autism and Ethics: The Stories We Tell

Our books Jul 12, 2021

By Flora Kann Szpirglas

Nowadays, when people are asked about autism, many of them could tell you that it is an innate and lifelong neurological condition that affects how a person lives in the world today, because it involves a number of sensory and developmental issues. Due to the greater diversity in representation of autism, for instance in TV shows such as Josh Thomas’ Everything’s Gonna Be Okay, or Netflix’s Atypical, it should be easier for most of society to understand autism. However, what people often might not be able to see from a distance is that autism also involves many ethical questions. Indeed, since autism has often been perceived as a disease that people should be cured of, or which should be prevented, autistic people have also been dehumanized or mistreated and misrepresented in the past. This is also why shows such as Everything’s Gonna Be Okay, or Atypical, which both have an autistic cast, are beneficial to our understanding of autism, as they both depict autistic people leaving successful and fulfilling lives.

Towards an Ethics of Autism explores these ethical issues through a range of methodological approaches, including history and psychiatry, neurology and biology, but also philosophy and therefore bioethics. What matters today to our understanding of autism is not simply to figure out what causes the condition and how to prevent it, but if we actually should do this. Should we try to prevent autism using prenatal screening and termination of pregnancy? Should we try at all costs to ‘cure’ or ‘improve’ autistic children when we know the condition is innate and will never go away? Should we give a diagnosis of autism to children in order to provide clarity? Should we diagnose adults with autism when they have already managed to live their lives successfully by learning various coping mechanisms and strategies, and might then see the tables turn by the stigma of their newly diagnosed condition, especially in the workplace? At the same time, autistic adults do appreciate this new identity and it helps them move forward.

One of the many ethical issue that is tackled in the book is that of language. Challenges related to communication and language are something people often associate with autism, for instance due to popular representation such as Pete, the brother of one of the main characters of the American novel series Gone (2008-2019), who is autistic and does not talk. After discussing previous theories about the speech issues experienced by people with autism, Towards an Ethics of Autism gives an insight into modern theories such as that of Laurent Mottron, a French psychiatrist, who suggests that autistic people could be hyperlexic and more interested in text and image. In their 2007 video In My Language Mel Baggs showed that autistic people have a different, perhaps more  direct way of communicating rather than a complete refusal to communicate, and this also appears in Life, Animated, a 2016 movie in which an autistic child and his parents managed to communicate through Disney characters.

After over ten years of research, Kristien Hens, a bioethicist from Belgium focusing on pediatric care, offers a new take on an ethics of autism. While previous researchers argued, based on questionable assumptions regarding autistic people’s presumed lack of empathy,that autistic people are ‘among’ us but not truly ‘of’ us, Towards an Ethics of Autism provides us with an inclusive approach that will give anyone the tools to approach autism not merely as a detached concept, but as an identity shared by many people throughout the world.

Towards an Ethics of Autism: A Philosophical Exploration by Kristien Hens is an open access title available to read and download for free here.

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