Who are The Autists?
I was prompted to write this post after reading a review of a book about autism in the Times Literary Supplement – James Cook writing about Clara Törnvall’s The Autists (TLS 23 June). So, it isn’t a review of the book, or even a review of the review. It’s a note about a common problem I see with the popular discussion of autism.
Törnvall is described as a successful journalist and TV and radio producer who has been diagnosed in adult life as having autism. Her description of what that means will be reasonably familiar to anybody who has encountered recent coverage of so-called high functioning autism among people in the public eye – she doesn’t pick up on subtext/banter, she struggles with eye contact, she doesn’t like being interrupted, she has a few (but intense) interests, she has a long-standing proneness to anxiety. Her book is presented as myth-busting but it has to be said some of the myths are rather underwhelming – woman can be autistic; autism isn’t a disease but a (neurodevelopmental) condition; autism’s causes are biological with an hereditary component. Still, apart from the occasional lapse into hyperbole most of it seems uncontentious enough.
What I found problematic, here and more widely, is the merging of two different ways of talking about autism – justified no doubt by the spectrum metaphor. Two because current discussion of autism treats it in two ways – as a disorder, often disabling, or as a manifestation of natural variation in human behaviour. To my mind these require different vocabularies. In the former case it is appropriate to talk about diagnosis and to regret the lack of a cure (as Cook does); in the latter we should use the vocabulary of recognition of (neuro)diversity and regret the inflexibility of modern social life. This distinction calls for clarity about what defines the boundaries of autism as a disorder (qualitatively different manifestations and associated severity of disability), but that is missing from Cook’s review and from much public discussion of the topic. Instead the language of diagnosis is used across the spectrum, and we are invited to be optimistic that more and more people (and especially women and girls) are receiving the diagnosis.
I think this merits pause for thought. Overenthusiastic application of diagnostic labels to historic figures may be merely silly (Beatrix Potter? Really?), but we should be careful not to categorise all sorts of people (especially the young) as so-called Autists on the basis of eccentricity, social awkwardness or a tendency to quirky infatuation with objects. Labels can be damaging; maybe not everybody will benefit when they’re growing up from being told (or others being told) that they’re an Autist. And you don’t need a diagnosis to try noise-cancelling headphones.
At the same time, there is something potentially damaging to the interests of the severely disabled if we appropriate the language of disorder to describe normal variation. The person with a severe disabling autistic disorder – who may be prone for example to impetuous running, persistent hand-flapping or screaming meltdowns – is not recognizable in accounts of people who are, if you like, on the other end of the spectrum. So, there is little evidence that contemporary popular discussion of autism, concentrated as it so often is on those often described as high-functioning, does much for those who have highly disruptive (sometimes called challenging) accompanying behaviours and are unable to care for themselves or live independently. Awareness isn’t raised nor campaigns triggered for those most in need, and as a result it remains the inadequacy of our provision for people with a severe disabling autistic disorder that constitutes our society’s main failing of those with autism.
Postscript: an abbreviated version of this comment has been published as a letter in TLS 21 July 2023.