I wrote this on social media after seeing my very nice and respectful psychiatrist last week:
Saw my psychiatrist- additional medication prescribed. He also thinks I have bipolar. Meh, another diagnosis….
A friend asked if I have schizophrenia (my most commonly-occurring former diagnosis) or bipolar and I wrote this – Probably an autistic variant of one or other. Hard to fit with non-autistic mental health labels when Autistic experience – and presentation – tends to be different. Like all diagnostic tags the mental illness ones have two purposes – accessing assistance / support and identity. I don’t need a specific identity around mental illness – happy just to identify as a person with mental illness given the overlap between the conditions. And either schizophrenia or bipolar allow me to access the same supports and meds so I don’t mind one way for the other.
I think this is quite interesting, both in terms of my own mental illness journey but also, I would imagine, for others on the Autism spectrum. If you talk to Autistic people who also have a mental illness – and even some who don’t – they will often have similar experiences to mine around diagnosis. The Autistic person with mental illness seems to present a little differently to the non-autistic person with the same mental health condition. Unfortunately a lot of psychiatrists and other clinicians seem to want to fit the person into the diagnostic label rather than observing the person and finding a ‘label’ that fits them appropriately and allows them to access support and the best interventions to address their mental health issues.
Since 1995 I have had the following mental illness labels:
- Schizophrenia (and autism)
- Schizoaffective disorder (and autism)
- Atypical psychosis (and autism)
- Psychotic depression (and autism)
- depression (and autism)
- bipolar (and autism)
- Borderline personality disorder (and non-autistic).
You may notice something about this list. All the conditions except one were diagnosed by psychiatrists who had enough understanding of Autism to add it into the mix of my various attributes. The only one label which does not have me as Autistic is the one where my Autism and mental illness symptoms were completely misunderstood. I think this one might warrant a bit of a case study.
In 1996 I became very unwell with psychosis and depression and found myself in the psychiatric hospital near where I lived. I was there for a month and was then discharged, probably a bit earlier than I should have been. I was still very unwell and a few days later was sent to a different psychiatric hospital in the same region. The chief psychiatrist here was almost a parody of the worst side of his profession – he was arrogant, had very little empathy with his staff and had an unusually adversarial approach to people with mental illness. A nurse who trained in this hospital related that this chief psychiatrist thought people self-harmed ‘to get attention,’ despite this rather judgemental piece of reasoning for self-injurious behaviour having been largely discredited, even then in 1996. He was also quite misogynist and almost every woman in the hospital was diagnosed wiht borderline personality disorder. Anyone who has an interest in mental illness will probably be aware of the fraught nature of the borderline diagnosis. It has been described as stemming from the view that women are histrionic and manipulative. All I know is that when I was given this diagnosis all the support and kindness I had previously from mental health clinicians turned into blame. My new diagnosis meant I was seen as being 100 per cent responsible for my decisions. I was told I was being manipulative and a bunch of other nasties, so my aggression – which almost certainly came from paranoia mixed with Autistic meltdown and which I would have given anything to learn how to stop doing – was addressed through legal sanctions rather than medical support. The scary thing – or one of many scary things – around the borderline personality disorder diagnosis is that it is a misdiagnosis frequently given to Autistic women.
Autistic women and our experiences tend to not be very well known in psychiatry, even now. A few of the features of borderline personality disorder are issues with regulating emotions and difficulties with your identity. Autistic women often have alexithymia. Somebody who seems out of touch with their emotions and then has a meltdown in response to emotional / sensory overload probably looks to a clinician like they have emotional disregulation. Similarly, Autistic women and people with borderline personality disorder both tend to have identity challenges. However for Autistic women these are more likely to be related to trying to be accepted by peer groups. To a outsider though, someone becoming a socialist and then a born again Christian looks more like they have issues with their core identity, than than the probable reason an Autistic woman would do this – they don’t feel accepted so adapt to be accepted by whichever peer group will have them. So while the misdiagnosis of Autistic women with borderline personality disorder is understandable, it is also incredibly unhelpful. Mental health clinicians need a better understanding of Autism to avoid this misdiagnosis occurring.
While I say that diagnostic labels are either for the purpose of your own identity and accessing services, this is only the case for the person who has the diagnostic labels. For the rest of the world, those labels can carry a lot of weight. Having an inappropriate psychiatric ‘label’ can lead to a lot of misery and mistreatment.
The right label – or as close as possible to it – is very important for Autistic people and / or people with mental illness generally.
My parting thought will be a reflection on a conversation I had in hospital a few years back, with a psychiatric nurse. The nurse told me about the psychiatrist in the USA who wrote the very first Diagnostic and Statistical Manual of Mental Health Disorders, back when being gay was in there as a mental illness, among other things that really didn’t belong. The author of the first DSM was also a botanist. The reason he wrote the DSM – the manual including all the mental illnesses – was that he thought it would be nice if human beings with mental illnesses could be categorised in a similar way to plants and trees. So the very nature of psychiatric diagnosis is essentially the result of a doctor who essentially thought I was the same sort of thing as a monkey puzzle tree, or a hydrangea bush. Psychiatric diagnosis is essentially a best guess based on an observation. The labels – while they can be very useful when applied competently – are just a way of grouping together individuals with similar experience. There are still around 7 billion individual human brains out there, all of them different. Make use of your labels and put them to good effect but remember that the fact you are you is probably the most important bit.