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The Art of Collectivity

The Art of Collectivity

Social Circus and the Cultural Politics of a Post-Neoliberal Vision
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New Ways of Understanding Autism
Excerpt

Chapter 1: Toward a Unifying Explanation of Autism

The picture that science paints of autism has changed radically over the past few years. But to fully understand these new discoveries, we need to be able to combine them with the lived experience of autistic people — an aim that science is gradually working toward.

We owe the description of classic autism to the Austrian psychiatrist Leo Kanner, who, in 1943, described autistic people as having two characteristics: aloneness (extreme solitude) and sameness (immutability, a desire to maintain permanence). The word “autism” had first been used in 1911, by Swiss psychiatrist Eugen Bleuler: it comes from the Greek word autos, meaning “self.” According to Kanner, autism was an “innate” disorder.

In the 1980s, the British psychiatrist Lorna Wing proposed a definition of autism based on a trio of areas affected in autistic people: communication, interaction and stereotyped behaviour, and restricted interests.

In 2013, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM ), published by the American Psychiatric Association, established the following criteria to create a consistent international standard:

  • “persistent deficits in social communication and social interaction”
  • “restricted, repetitive patterns of behavior, interests, or activities”
  • symptoms that show up early in life;
  • symptoms that cause significant difficulties for daily life;

None of these traditional descriptions of seemingly antisocial or bizarre behaviours takes into account the point of view of an autistic person. We therefore needed a new perspective: an overview of the theoretical descriptions that also incorporates both the lived experience of the autistic individual and a broad range of professional expertise with the aim of adopting an entirely new vision of autism.

The predictions we made from this approach were borne out in practice. They allowed us to make sense of theories that had stood up for more than thirty years. But the classic definition and the proposed reframing rely on totally opposite aspects of physical reality. According to the French sociologist Brigitte Chamak, when autistic people talk about autism, they aren’t talking about the same things as neurotypical people. Most people discuss the specifics of perception, how information and emotions are dealt with. The most intuitive description given is, without a doubt, Temple Grandin’s. Grandin is an autistic American, a well-known professor of animal science. According to her, autistic people are visual thinkers.

Until the emergence of neuroscience and a more precise understanding of development (for example in babies), it was generally believed that we could acquire a comprehensive understanding of internal human function by observation — that observers would understand autistic people by watching their behaviour. However, the discoveries of recent years and the actual experiences of autistic people, including Temple Grandin and Brigitte Harrisson, indicate that this is not the case. The naive, popular concept of autism is incompatible with research in neuroscience and child development, as well as with the lived experience of autistic individuals.

In order to move beyond simplistic and compartmentalized ideas of autism, we consider the fact that several very different theories can explain a single phenomenon and all be equally valid. And if two theories interpret the same phenomenon, the observer will choose the one that suits him or her best. So people’s understandings of autism will differ based on their vision, role, and knowledge.

Throughout the history of autism, we have seen the emergence of models or theories of increasing quality, from Kanner to current neuroscience, via Simon Baron-Cohen’s theory of mind, Uta Frith’s concept of weak central coherence, and Sally Ozonoff’s notion of executive (dys)function. Because each of these models contains an important piece of the puzzle, it’s possible that we might one day come up with a broad theory of autism, one that will take into account all the developmental stages of the autistic brain and have predictive capacity. Even if we aren’t there yet, we do already have a coherent theory: the hypothesis of the internal function of autistic thought structure (Harrisson and St-Charles). We believe this is the only hypothesis that draws together all the necessary explanations in order to offer an overall description of autism; it therefore forms the basis of our reflections here. This is not, strictly speaking, a scientific theory, but rather a theory whose principles and observed phenomena are confirmed in current scientific research. Our theory of autism takes into account scientific literature, recent discoveries, treatment methods, and lived autistic experience. Our clinical approach has been effective for over ten years, regardless of the age of the autistic person, the extent to which he or she is affected, and whether or not other problems are also present. It also has a certain amount of predictive power.

More and more people know of the existence of autism spectrum disorder (ASD), which incorporates what were previously known as Asperger’s syndrome and classic autism. But knowing it exists doesn’t necessarily mean understanding what it actually is. We believe that the images currently associated with autism tend toward catastrophic scenarios.

People often describe autism in three main ways. They tell us that autism is a plague, an epidemic. They talk about bizarre behaviour and autistic meltdowns in a way that evokes outdated beliefs: autistic people are children off in their own worlds, banging their heads against a wall, never having relationships with others, but possibly gifted with exceptional talents. Finally, society condemns people to their autism before they have a chance to develop: they are thought to be unable to achieve independence, so people jump in to plan their lives and organize their future security.

Another phenomenon clouds the picture further. The media often emphasizes autistic meltdowns, as well as the Rain Man–like behaviour and abilities of some autistic people (who actually represent around 1 percent of those on the autism spectrum). Any autistic people who don’t have these traits then become non-autistic, or merely uninteresting, in the popular imagination. Worse still, if people can’t “see” autism, they don’t take it seriously.

Certain persistent autism taboos, along with the effects of stigmatization, might be the origin of two survival phenomena among friends and family of an autistic person, the “collateral carriers” of autism: either they rush to hide autistic behaviour to make the person’s condition invisible or, paralyzed with fear, they do nothing at all, which wastes precious time for the autistic person.

Such beliefs, of course, perpetuate a perception of autism as something to fear, and lead to unhealthy behaviour: instead of interacting with the autistic person, we talk to the people around them. This means others speak for the autistic person. We talk a lot about autism itself, about the suffering of parents and families, the challenges facing professionals, but we don’t talk enough about autistic people themselves. We don’t hear autistic voices.

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Baby-Led Weaning

Baby-Led Weaning

The (Not-So) Revolutionary Way to Start Solids and Make a Happy Eater
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Crohn's and Colitis

Crohn's and Colitis

Understanding and Managing IBD
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Your Child's Voice

Your Child's Voice

A Caregiver's Guide to Advocating for Kids with Special Needs, Disabilities, or Others Who May Fall through the Cracks
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Let Them Eat Dirt

Let Them Eat Dirt

Saving Our Children from an Oversanitized World
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