I’m not really sure what I’m trying to do writing this, but I told myself I’d get back to writing so when inspiration struck I thought I better follow through.
It’s been a while since I wrote anything and much longer since I let myself write freely like this on the internet, but I just watched Dr K’s new video on trauma and he said “Language can be a substitute for action” so I’m going with it.
This post has turned out to be super long, so here’s an outline of what’s covered:
- Setting The Scene (Context)
- Diagnostic Constructs & Neurodiversity
- Everything Is Art
- Life’s A Game of Tags & Categories
- TL;DR (Summary)
Setting The Scene
I’m just about to finish my second year of BSc Psychology. I have one exam to get through for my developmental difficulties module and then onto my final year and dissertation (which I’m thinking of doing on autism).
I recently wrote and essay on Borderline Personality Disorder and surprisingly found it quite fun. I thought I’d hate it having been misdiagnosed with BPD and all, but I relished collecting evidence to destroy the claim I had been asked to discuss. One of the things that stood out to me while writing it was the biosocial developmental model of BPD put forward by Catherine Winsper (2018). To cut a long (and publicly inaccessible) paper short (and simplified), it theorises BPD to potentially arise as a result of something like: early origins (e.g. genetic or pre-natal) → temperament → potential deficits in caregiving → may contribute to disrupted co-regulation & and transmission → potential biopschyological impacts → potential leading to emotional cascades in adolescence (exacerbated by invalidation/abuse) → maladaptive traits potentially cumulating to clinical disorder.
The other thing that pleased me which researching is finding so much documented questioning of the validity of BPD and the overlap with BPD and trauma and the problems with the diagnosis from the likes of Drs Jay Watts & Jessica Taylor (and here). It all made for what I felt was a really good essay (though I’m yet to get my mark for it).
Following that I had an interesting chat with my therapist about it and she told me how in South Africa things like personality disorders aren’t used as permanent labels, but more like descriptions for phases of life.
I also had a recent lecture in my developmental difficulties module on common pathways to mental disorder and comorbidity and so much of it has been whirring round my brain ever since, particularly this longitudinal study into the epidemiology mental disorder (in which only 85% of the cohort had onset of mental disorder – at some point – by age 45 and those who onset youngest had a pattern of more comorbid disorders and more persistent disorder across time). We also talked about what it means for a disorder to have a genetic basis but not a clear genetic cause, such as with ADHD. We say epigenetics and talk about the epigenetic landscape, but what exactly does that mean? Well your genes influence your neurochemistry which influences your behaviour which influences your environment and how people respond to you which can influence your neurochemistry and how over time that can change the way your brain works which seems pretty obvious looking back but it was the first time it had been spelled out and we’d had a proper discussion on it. The key takeaway from the lecture was the idea of developmental cascades and the importance of early intervention.
I recently shared a post from @thisisafleshprison the other day on my instagram story which highlighted some of the problems with psychiatry and over medicalisation of our minds.
Diagnostic Constructs & Neurodiversity
With so many psychological disorders, there is no one cause and many have overlapping symptoms or might affect the same areas in a different way. And sometimes the same symptom can have completely difference causes in different people. Take executive function deficits (planning, working memory, inhibition, selective attention etc) for example. Executive dysfunction is characteristic of ADHD, but it’s also seen in depression, anxiety, autism, schizophrenia and people who have experienced trauma. It’s theorised that executive function deficits are so common among psychiatric disorders as they occur developmentally downstream of other impairments, whereas in ADHD they are a primary impairment. It’s why impairment of executive functions doesn’t necessarily mean ADHD.
But what even is ADHD? Well it’s just a label for a set of symptoms, but none of those symptoms are exclusive to ADHD. Even when they look like ADHD, they might not necessarily be ADHD – even if they’re mistaken for ADHD. They could be though if we changed how we defined the construct of ADHD. Everyone has ADHD symptoms sometimes, but that doesn’t mean it’s ADHD. It’s the frequency and level of impairment that is often most telling, as well as the history of the symptoms, but what if we changed that? What if we just said anyone with these symptoms at any time has ADHD? Aside from the diagnosis becoming fairly meaningless, it would probably catch people who have executive function deficits for other reasons if they weren’t ruled out first.
A Quick Note About BBC’s Panorama On Private Clinics Diagnosing ADHD
I started writing this piece over weekend and since then there’s been a lot of fuss kicked up by the BBC and panorama over private ADHD diagnosis. There have been many valid points made on Twitter surrounding the piece, but I think it’s important to note the validity of some of the concerns raised. While I agree that most people who seek a private assessment at the cost of several hundred quid are likely fairly sure they have ADHD and I don’t think seeking a diagnosis for a condition you have should be as difficult as it is, I do question whether all new ADHD diagnoses are ADHD. The pandemic likely had a big effect on our attention and executive functions and that paired with the rise of posts about ADHD, as well as many of the private clinics that have popped up to capitalise on this and the NHS right to choose, may mean that some of the new diagnoses of ADHD are actually misdiagnoses and impairment may be due to other things which were not ruled out. That said, I think this is more a problem with clinical standards and the need to conduct thorough assessments, collect medical histories and rule out alternative causes of impairment.
Making some of the points I’ve made has not been easy given the current discussions within my communities, but I hope I have made it clear I am not questioning all new diagnoses. I myself have a private diagnosis after an NHS psychiatrist suggested ADHD but didn’t have the resources to properly assess me. Having had bad experiences with psychiatrists in the past I ended up going to a private clinic run by NHS doctors from the Maudsley (where I was on the waiting list anyway). The point I’m mostly trying to stress when I talk about misdiagnosis and other causes is the importance of a thorough assessment. There definitely seem to be some shoddy private clinics about that don’t take patients safety as seriously as you’d expect, so it’s not a huge leap to question the thoroughness of their assessments and accuracy of diagnosis too!
I don’t want to hijack this post too much, so you can read more of my thoughts on BBC’s Panorama investigation into private clinics diagnosing ADHD here.
It’s not unlike the increase in autism diagnosis. Part of the increase is due to awareness, especially in women, but part is also down to broader diagnostic criteria. On the one hand, being part of the increase myself, I am all for every autistic getting the diagnosis and accommodations they need. On the other hand, if we’re moving forward with thinking of autism as just a different kind of brain in the realm of neurodiversity, why would we want one?
The psychiatric world sees autism as an impairment, a deficit and a disability and I think this is a reason why many unidentified autistics don’t seek a diagnosis, whether to avoid stigma from others or their own stigma which stops them seeing themselves as autistic. Clinically significant impairment in key life domains is one of the criteria in the DSM itself, so some of us with autistic brains may never be flagged nor diagnosed. One of the most stereotypical autistics I knew growing up is also one of the most, if not the most, successful person I know. Despite the beyond obvious traits they’ve never been diagnosed because being autistic hasn’t impaired their ability to go about life. I would, and do, say that I am disabled, but it is not my autism that disables me, it is the environment that is disabling (though I should note my own relationship with disability spans beyond Autism/ADHD). Realising I was autistic was the most eye opening discovery of my life, but aside from access to reasonable adjustments my clinical diagnosis didn’t do anything more than my self-diagnosis. Despite the way brains like mine are pathologies and categorised as medical disorders, there is nothing for people like me out there, not from doctors that diagnosed me at least. Most of what is out there is a product of my own community. And if we are talking about autism as a developmental brain difference, community might just be the best thing there is. A cultural tribe hoping to thrive.
I want to be clear that conceptualising autism as a variation of neurodiversity does not mean all support needs go out the window. I certainly still need support, and there are many who may need more than me, regardless of intellectual disability or other impairments. The concept of neurodiversity and the social model of disability does have its limitations when it comes to those who need/want support and/or treatment. Seeing the environment as disabling does not mean that there are things some people don’t genuinely struggle with or cannot do, but the idea of impairment is all relative to the norm. Every autistic is different just like every human is different and it is important to try and support and enable people to thrive regardless of what flavour of brain they have.
The way I think of this is the same way I think of my own short stature – it’s not explicitly impairing enough to be a disability, but in certain environments I definitely stuff more than others and need some help! There are times it allows me to do things others can’t do either, but usually this is something fairly arbitrary like not have to duck for a branch. In the same way you wouldn’t necessarily have to diagnose someone who was born with only one hand with anything, but they are still disabled in a world when most people are born with two. I realise it’s different for things you can physically see, but even with a diagnosis I have to tell someone I’m autistic and even before I knew most people close to me got more accustomed to the way I was regardless of knowing, and maybe in the wider world it too should be that I don’t need a label to ask for what are literally called reasonable adjustments because we are all different and even non-autistic people would likely benefit from access to adjustments. There are definitely some issues to navigate when thinking about moving away from the medicalisation of neurological variation and an individual differences approach to everything might not be easy to scale, but if we as a society are to move forward with the concept of neurodiversity then maybe our systems need to too.
Thinking About Symptoms & Causes
All of these things have been whirring round my head and mingling with other thoughts for the last couple of weeks and highlight that has stuck out for me is the importance of symptoms. All these disorders are constructs we created, but the symptoms and behaviours feel like the key. While I think it can be important to know the underlying cause of symptoms in order to address them, it’s not always that easy. If a patient presents with psychosis, knowing whether it’s a one off drug-induced episode or part of pre-existing condition like Schizophrenia or Bipolar would useful when deciding on a treatment pathway. In the same way if a patient presents with anxiety all the CBT in the world might do nothing to change their thinking if the onset of anxiety is not considered.
For example, I believe my anxiety onset due to situational circumstances that I will not go into today. I started CBT while still in these circumstances and it did nothing. I later learnt in DBT that my anxiety was justified for the situation I was in. While my anxiety is worse now because other justifications that have solidified its place in my emotional arsenal, I am in a better place to tackle it because I am not currently under threat. That said, I don’t think it’s as simple as just treating the symptoms or suppressing behaviours with something like CBT or DBT (even if they can potentially rewire the way my brain works over time). If I don’t address the why, it’ll likely just manifest in other ways. If I don’t question why xyz makes me anxious and consider what catastrophe I fear or process the emotions I left behind from that time I won’t have the opportunity to reassure myself of my own safety. It’s not about dealing with one anxious thought, it’s about dealing with my anxious mind.
Dealing With Mental Clutter
You can clean your house but if you’re a messy person you’re only going to dirty it again. You can either accept you’re a messy person and your house will always be messy, or you can build habits and structure to reduce the chaos and clutter. It’s never going to be pristine with all the people passing through trekking muddy shoes through your space, but if you make a habit of cleaning the floor after you’ve had people over (or better yet create boundaries and stop letting people in if they don’t take their shoes off) then it won’t get a chance to pile up and become a mess. If you make it a habit to process mess as you go along it will never accumulate to the extent it gets to the messy stage. Once it’s at the messy stage, the idea of cleaning up can be overwhelming and it can be easier to just let yourself be labelled a messy person, even if some people stop wanting to come over. After enough time all the habits you built are gone and tidying up becomes one big chore and it’s easier to just shove everything in a cupboard and try and forget about it.
The thing about mess and clutter is it often accumulates when you don’t know what to do with things or stop to think if you still need it and what might seem like a messy person is just someone who doesn’t know what to do with their shit. Sometimes you might not realise you no longer need something until you consider its purpose and why you bought it in the first place, and I’d argue coping mechanisms like anxiety are much the same. It’s easy to hold onto things that no longer serve us ‘just in case’ or because we’re used to them, but it only gives us more to tidy (and less space for things that do serve us!). There’s no point putting it away if you can put it in the bin. Dealing with the mess isn’t about constantly tidying clutter into neat piles on your counter so your kitchen looks clean but more about processing its various components until there’s nothing left to tidy.
This isn’t the analogy I intended to share, but I guess happy accidents like these are the benefit of writing without a purpose. Getting back to diagnostic constructs, comorbidity, neurodiversity and all that symptom malarkey – thinking about the medicalisation of human behaviour such as emotional responses and responses to trauma – where am I going with this? Well I’m going for the gold with another analogy. In my time of being mentally fucked, I’ve had several suggestions of psychiatric diagnoses come my way. Some of them fell into my lap, some of them I had to run to catch. Some of them I batted away, some of them stuck around. Some faded into the background, others are the star of the show.
We go through life being told everyone is unique but I never really thought of it in the context of psychobiology. I struggled to harmonise the idea of neurodiversity with the diagnostic labels used to categorise brains. I tried to liken it to biodiversity like others do but it never quite stuck with me. I tried liking it to different types of cuisine and thinking about comorbidities as fusion and it just didn’t work either. It was too categorised. If I learnt anything from the Dunedin study we looked at in class it’s that people’s diagnosis changes over their lifetime and few people never experience mental disorder. If I learnt anything thinking about common pathways and comorbidities it’s about the overlap of symptoms with so many things. And one of the first things that was apparent when I started studying psychology was that there are a lot of things that we don’t know the exact causes of or how they work, it’s all mostly theory. So how does neurodiversity fit in if particular neurotypes and human behaviour has been medicalised and we should be focusing on symptoms?
Everything Is Art
I think it’s like art. We are all making our own piece of art and we all have our own art style, materials and perspective in the same way we are all living our lives and we all have our own individual differences, neurology and experience. Maybe the most ‘neurotypical’ of us are painting in realism while those with acquired brain injuries paint in abstract. Maybe autistics minds prefer pointillism, but those with ADHD opt for stickmen they can produce quickly. Maybe buttercup yellow represents sensory differences while baby blue indicates depressive symptoms. Maybe those with psychotic symptoms have a bit collaging but their various journeys to psychosis are represented another way, whether that’s calm bright geometric shapes representing other aspects of mania for those with bipolar or dark watercolour oceans with connotations of anhedonia in schizophrenics. Maybe we’d realise everyone has a splash of trauma red somewhere or the other, but there’s a whole lot more of it on the canvas of those with (c)ptsd accompanied by anxious spotting dotted around from flicking a paint brush. We might all be looking at the same muse for our art and living in the same world but we all have our own art style, materials and perspective that is integral to the canvas we create. Even with the same muse or reference and canvases of the same size, no two pieces are going to be the same, even if we have similar styles.
Life’s A Game Of Tags & Categories
Labels and categories are certainly helpful when it comes to thinking about psychology and mental disorder, but I think they are also limiting. By acknowledging the lack of discretion and level of crossover between various diagnostic labels and their symptoms we can give more attention to the problems and impairments we face. While there are some conditions that have more distinct causes, such as Down syndrome, there are also features they share with other conditions we know less about. The diversity, even within those considered neurodivergent, is so great that the categorisations are not always useful (and sometimes even harmful). Take autistics for example, it’s always stressed how different we all are. Some of us mask, some of us speak and some of us sing. Some of us a hyposensitive and some of us are hypersensitive. Most of us likely have comorbidities but those comorbidities aren’t always the same. When I think of the way we classify medical diagnoses they feel like such rigid categories like folders on a computer or notes app. The problem with folders is you can only use one and sometimes things belong in two (or three or four). The note-taking solution to this is using tags, so I don’t see why it can’t be applied here.
I am autistic and I have ADHD, but I am also a victim of trauma and abuse, a sufferer of anxiety and a chronic depressive. I may not have BPD, but I certainly have traits (as I’m sure many of us do) and there’s definitely been times they were more prominent on my canvas, but in time things change and symptoms get painted over. I could argue myself to have every personality disorder in the book if I wanted to (which is why I think they lack diagnostic validity). I have a complicated relationship with reading and language which might artistically manifest as using letters as components of my artwork, whereas it might feature more heavily on the canvas of someone with dyslexia. I do think cause matters if it can be identified. For example my checking behaviour in relation to the hob is not OCD, but more an anxious coping mechanism as the result of ADHD. A visual reminder to make sure the hob is off will do a lot more for me than it would someone with OCD who has the hob as part of a ritual. That’s not to say that sometimes the same issue can’t be solved with the same treatment or accommodation though. My sensory issues due to autism may be different to my sensory sensitivities that are a result of trauma, but that doesn’t mean they can’t both be supported with the same accommodations such as avoiding crowded places. Context matters in many ways, but sometimes I think it’s more about our context than the behaviour. It would be easy to see some of my ‘symptom’ behaviours and label all of it anxiety, but only with context can you see the bigger picture of anxiety being a way to manage ADHD or protecting me from circumstances that in the past have been harmful. As far as I know that’s literally the evolutionary purpose of anxiety, but instead of being seen to do its job it’s medicalised, suppressed and shamed.
To summarise the points I’ve rambled on about for far too long now, I am questioning the validity of much of the DSM, I am questioning the practices of some private clinics and I am questioning the medicalisation of different neurotypes. I want to move away from thinking of diagnostic labels as distinct categories or folders and start thinking of them more like tags. I want to focus less on man-made labels in general and more on causes, traits and thoughts/behaviours.
But bigger than all these issues is the issue of the treatment and outcomes. How much time is wasted researching conditions or diagnostic practices in a way that does nothing to benefit the outcomes of those afflicted with it? How many papers will there be on barriers to diagnosis before we start thinking about support and treatment after diagnosis? How many appointments will be spent on assessments that could be used for support or treatment? Too often you’re given a label and not a whole lot more. Look how much time I’ve whittled away (and you have to if you’re still reading at this point) discussing the language we use which, while important, does nothing to improve the outcomes of those we use it to describe?
I’m not saying labels aren’t useful, just that their use has limits and in an already limited system maybe we focus on them a little too much (and with too much rigidity).
I decided to study psychology for my own personal development and it’s lead me to a lot of thought trains likes these, but with every thing I learn it feels more and more like my duty to do something with it. Maybe that starts by sharing what I learn and the thoughts I have, but it does not feel good enough to end there. The problem is figuring out my place in an industry I feel so strongly against.
These are my thoughts, what are yours? I’d love to know!
I was quite nervous about writing this post as I don’t want to invalidate anyone’s struggle with their own mind. I wanted to share my thoughts prompted by the things I’m learning, especially with so many of us wanting to away from medical models of mental disorder and disability, but I also feel very aware of gaps left unfilled by social models of disability and the neurodiversity movement.
EDIT: Just saw this and it felt relevant to add: