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…

Beyond The Silence: my life, the world and autism Tito Rajarshi Mukhopadhyay

  • March 30, 2021
The National Autistic Society 2000

First person accounts of what it is like to live with autism necessarily come from people who do not have substantial learning disabilities or communication problems. They provide us with insights into autistic experiences but they unavoidably leave a sense that the picture we are forming is incomplete. This memoir by Tito, a young Indian man, helps us inch nearer the inner world of the otherwise unheard majority – he is significantly disabled and essentially non-verbal, struggles with social interaction and cannot live independently. And yet he has staggering literacy skills. He tells us of his early life and development and especially of the influence of his mother’s extraordinary dedication to ensuring he achieved everything he possibly could in life.

Tito’s writing flips between the first and third person. He describes experiences that are typical of what we know of autism – intolerance of change or of novel environments, which can provoke screaming or withdrawal; great difficulty in social interactions; learning new skills is a formidable challenge. But much of what he says I found challenging to my preconceptions. For example although Lorna Wing (who wrote the foreword to the book) comments on his self-absorption I was struck that he seems aware, at least in retrospect, of the effect he has on other people – his mother’s love and determination which comes coupled with frustration and times of distress, and also how others must see his odd behaviour.

A standard view (cliché?) about autism is that the main problem is an inability to form an understanding of the mental life of others. And yet one of Tito’s main self-reported struggles seems to be to exert control over his own actions. He cannot copy movements. Even when he knows what he wants to do he cannot initiate actions. He comments on all this without it being entirely clear how he feels about it. ”He needed to move on. He needed to write”.  But then “The boy continued to flap and to remain mute”.

Tito writes poetry and tells stories. His book The Mind Tree is astounding. And he seems to take some of the playfulness of creativity into his sessions with clinicians and therapists: “He got proud of his worthless worth” and notes that “The boy was too much flattered by the remarkable impact he made on the people who wondered how he possessed such a gift”.

Tito Rajarshi Mukhopadhyay | ReverbNation

Tito and his mother Soma now live in the USA, and online it is easy to find some scepticism expressed about Soma’s attempts to generalise her approach with Tito to a more universally applicable therapeutic approach. It would be a shame if contention there detracted from this remarkable book – the story that Tito has to tell and the creative ability he has to show us.

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