Self-harm, autism and “personality disorder”

  • June 17, 2024

It isn’t uncommon to find personal accounts of the experience of being diagnosed with autism in adult life. Typically, such accounts comment on what a shame it is that the author wasn’t diagnosed earlier in life – perhaps because they are female and autism was thought to be near non-existent in girls. Quite often the benefit (or the one assumed to have been missed) comes from the simple fact of being able to put a name to difficulties in day-to-day experience of which the individual is already aware but for thinking about which they had no vocabulary.

One subset of these accounts comes from people whose experience, perhaps not so day-to-day, has come from contact with mental health services. The new diagnosis sheds light on what has been problematic about previous encounters and (with luck) what might be done differently in the future.

To a considerable extent in psychiatry (and to some extent in the whole of medicine) diagnosis depends upon pattern-matching. It can work well to produce quick results in situations where speed is important, but it can go wrong. For example, a topic of much recent discussion has been the problems caused because diagnostic “patterns” are derived from clinical practice and research that privileges male examples. In relation to autism the problem is that the presentation of distress does not match the expected pattern – social awkwardness, apparent lack of engagement, seeming detachment, coupled with difficulty in articulating the emotional problem, these do not create the picture we are taught to anticipate in somebody during an emotional crisis.

One area where this can play out is in the assessment of self-harm. It isn’t clear how common it is, but it is likely that at least for some people the mismatch between expected and actual presentation of distress leads to a diagnosis of (guess what) personality disorder. Recently I was alerted to a blog discussing this possibility. I liked it for two reasons. It concludes with noting that “autism” in this context is a way of naming “difference rather than defect or disorder”. I prefer this approach to the alternative “BPD is really … (cPTSD, autism or whatever)” because of its emphasis on the need to consider diversity rather than diagnosis; the former applies to everybody while the latter does not. And, unusually in my reading experience, it offers some practical (and realistic) advice about what to do if you are in this predicament.

An important question raised by this thoughtful blog is the possibility of challenging and overturning a previous diagnosis of personality disorder. Not, I gather, a suggestion that has played well with the clinicians with whom it has been raised so far, but I have the impression that the blog’s author, fortunately, won’t be giving up the attempt any time soon…

Who are The Autists?

  • July 22, 2023

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.


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