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New ways to think about Autism and why it matters

What’s wrong with using the word “spectrum” to describe autism? Perhaps some would suggest that the precise terminology used for referring to these medical conditions is relatively unimportant. In fact, the current terminology facilitates views that distort or oversimplify reality and may be causing harm.

In talking about people with one or another form of autism, phrases such as “severely affected” or “high-functioning” are used frequently, but they can conceal as much as they reveal. These two descriptions are often used as if they were opposites, yet there are probably cases where both descriptions apply to the same person.

An example unrelated to autism may be instructive here. As a teacher of medical, graduate, and undergraduate students, I encounter non-disabled people who are much better at oral than written communication or vice versa. It makes sense to evaluate the two capabilities separately and to tailor any intervention to the skill that is less well developed. The average of the two abilities is not especially helpful for practical purposes. What is the connection to the language used to discuss people with autism?

The needs of any person with autism can be determined to a surprising degree by details that are obliterated when the condition is viewed solely through the lens of severity, i.e. where they are on some spectrum. For someone who wants support or assistance, what specific help they want can be influenced by their goals and circumstances as much as by their particular medical symptoms or behaviors.

Further complicating the effort to fashion useful treatment or intervention, abilities and deficits can be highly uneven among people with a diagnosis of autism. Some people with more cognitive ability are less able or are less comfortable socially than people with less cognitive ability. There are people with outstanding verbal skills but very limited abstract thinking ability.

With respect to severity, it is probably also necessary to distinguish between severity of deficits in abilities or skills and the severity of need for treatment or intervention. So, for example, a highly verbal person may need medical attention and therapy for other issues, related or unrelated to verbal ability.

Other issues of language and conceptualization pertaining to autism were raised in 2017 by Simon Baron-Cohen. In Baron-Cohen’s view, autism is not a disorder, at least most of the time. He argues that individuals with autism are people with different abilities but that their brains are not dysfunctional. He allows that in some cases autism may be associated with disabilities but attributes many of these problems to other conditions.

Perhaps Baron-Cohen’s perspective is the result of what one might call office or lab autism. Some people’s demeanor and actions in a doctor’s office or a researcher’s lab will be inadequately representative of their full repertoire of behavior at home and anywhere else they may go. I found it telling that Baron-Cohen made no mention of episodes of agitation that are often known to parents as “meltdowns.” These very challenging outbursts are not limited to young children. This behavior is reasonably viewed as a type of dysfunction. This sort of behavior is part of the condition of autism.

I do agree with Baron-Cohen that people with autism need greater acceptance and inclusion. At present, a substantial proportion of adults with autism who require some degree of continuing support are socially isolated, struggle to find adequate and stable employment, and have inadequate general medical care. Increased insight into the complexity of autism and its associated clinical problems (coupled with appropriate empathy) might help to improve the lives of these people.

Featured image credit: “Colour, pastel, square” by Markus Spiske. CCO via Unsplash.

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