#6: Diagnosis
While more individuals find tools and words to express their neurodivergent experiences, we can't let unsuitable systems off the hook
The headteacher of my primary school was fond of homilies. One assembly that stuck in my head was about the dilemma of sore feet. Confronted with cuts and tears on the rough ground, a solution had to be found to prevent all the pain. One approach, Mr Dell noted, was to pave the entire world with leather. But wait: isn’t the better answer to wrap our feet in leather – same effect, less work?
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I’ve spent much of my twenties ducking diagnoses, yet the one I got last year (a prolactinoma, tres chic) wasn’t one I had prepared for. Based on family history, I’m at increased likelihood of schizophrenia, bipolar, borderline personality disorder (BPD), substance abuse, probably more. I was ok with having depression and anxiety in my third year and fresh from uni: that felt like standard, garden variety stuff that could be passed off as situational rather than genealogical. A post-grad slump, nothing more. But I was lying in wait for the others to emerge.
With some people having had more time to sit with their thoughts and confront their patterns over the past year, there has, if my timeline is at all indicative, been an increased interest in people getting diagnoses with two things in particular: autism and ADHD. Even if you were used to ‘working from home,’ the shift in March to lockdown – when you couldn’t sit on the grass in the park solo, let alone visit a café or library – was an intensely destabilising one. It stands to reason that many people, stripped of their hard-earned routines, were less able to mask their idiosyncratic patterns and approaches and faced crises of confidence and productivity.
I’d planned on having this as the first longer Sunday read for Critmas since the start of the week and in the past couple of days before sending this, two British female writers have documented what diagnosis means for them: Chanté Joseph for Refinery 29 on Black women and ADHD; Marianne Eloise for the New York Times on the barriers to have autism recognised in girls and women.
I’ve been reluctant to pursue an ADHD diagnosis, despite thinking I likely fulfil the criteria over the past few years.
Firstly, booking an appointment with the GP is a demonic process and prepping for it isn’t helped by the kind of executive dysfunction, namely identifying, prioritising and then doing tasks, that I need the help with in the first place.
Then there’s the fact you’re only really supposed to go to the doctor with one complaint per 15-20 minute slot and which one do I go with?
Maintenance: I need a new prescription for a compression stocking for my chronically swollen leg, also can I get some manual lymph drainage massage for that? I went for a couple of private sessions when I was in Glasgow and it was great but also my salary was £15.5k back then soooo…
Mind: so it turns out I’m probably dealing with trauma, but my focus isn’t there to finish The Body Keeps the Score now that I don’t have the bus to swimming lessons on Saturday mornings to read it on. I’ve found an EMDR therapist (the tab has been swimming on my browser window for months) but that feels like setting myself up for another ongoing cost and I’m aiming to be debt free by end of March (new financial year, new me) so it’ll have to wait/I’ll need to land a payrise to justify it. Given my experience last time around, when I was offered telephone guided self-help rather than CBT, I don’t imagine you have the resource to refer me on the NHS.
New (womb): last year, after an internal ultrasound scan, I got a text saying I had fibroids and probably also had PCOS. There wasn’t any follow up and it didn’t seem urgent on my end, but maybe it was? And now that I have regular periods again, I might have to confront the strong likelihood I have premenstrual dysphoric disorder (PMDD). A real hormone soup, eh?
The quick answer for why I don’t want to go down the diagnosis route is that I rather think I’ve got enough to be getting on with and the process of getting treatment for what ended up being a benign growth on my pituitary gland tired out my already slightly knackered body and I’d quite like a rest. (More on that here, including an audio version of the essay.)
As Eloise points out, aspects of securing a diagnosis can be ‘dehumanizing and brutal,’ with a process that mirrors the struggle for conditions like endometriosis to be adequately identified and treated. At this particular point in my life, the risks outweigh the benefits. I simply can’t be arsed to plead my corner and get forgotten or turned down for help.
The real answer is a little more nested than this and takes me to the third piece from this year I’d like to reference. I listened to the audio version of the Guardian Long Read on dyslexia by Sirin Kale the other week. It outlines a battle between underfunded and overstretched local authorities and parents seeking tailored teaching and adaptations for their neurodiverse children. The latter camp have every right to fight or this; the problem is that they also appear to be noteworthy in their ability to secure it.
Someone in my family was diagnosed with dyslexia later in life; previously I think they were written off as ‘thick’ in school and in workplaces, struggling with typing and secretarial work. Through Kale’s interviews and research, it appears that ‘having difficulty reading’ and ‘being dyslexic’ should be approached in the same way to improve access to literacy. But whose children have parents with the apparatus, access and confidence to negotiate getting the support of educational psychologists, teachers and going through an appeals process? Which children, then, get extra time?
So too with ADHD. It can cost £545 to a get a private assessment, as per Joseph’s article. Let’s say I get assessed and it turns out I don’t have it: that’s a huge amount of money to have wasted. Worse still, I’ll be hit with the ruling that I’m just flighty and unfocused rather than underserved. But I have a feeling I would be able to secure a diagnosis: I can point to focus issues, identify several of the criteria in past work, using techniques of writing and argument that have seen me successfully fundraise for projects. I’ll be armed with knowledge gleaned from other people generously sharing their testimonies and raising awareness in public online, but also my education and upbringing (my dad was a psychiatrist).
Diagnosis is not unfamiliar or stigmatised in my circles: last year, a friend gave me The Collected Schizophrenias by Esmé Weijun Wang for my birthday, a book our other friend, a social worker, has read for his studies, alongside The Body Keeps the Score. Chatting to him the other month, he pointed out that a lot of the symptoms of ADHD align with the things that most make teachers’ lives difficult in the classroom. It makes me worry for the racialised and classed way it might be deployed in the education system.
In her article, Joseph details the run-up to having to leave her job:
‘my mind was like a pinball machine without any controls: constant lights, information, actions and ideas but no motivation to execute them.’
I can’t help but think: maybe the problem isn’t us, but work instead? I have friends struggling to answer how they demonstrated ‘high performance’ in their annual review, during a year mainly spent working in a bedroom with a chunk of wall missing because of a lazy landlord. The issue is with the system and the circumstance, rather than the individual, surely?
Not that being neurodiverse is ‘an issue’ but rather a negotiation with an unkind and surprisingly rigid world. In bureaucratic systems, having distinct categories provides some with much needed tools and legislation for reasonable adjustments. Professionals such as social workers are able to provide support if a client secures a diagnosis that they wouldn’t be able to otherwise. Medicine – yup, chemicals! – can be life changing, sustaining and enhancing. We disregard them at our peril.
However, I wonder if we’re thinking of neurodiversity as though we’re confronted with a world of leather vs a few shoes, when really, the worlds of work and education in particular are closer to a park at twilight. Rather than expecting everyone to carry a torch they have to source individually and articulate their need for light, instead we illuminate the path with a series of lamps*, paid for with our pooled resources, available at the point of use, no questions asked.
Utopian, I know. But with unknown numbers being affected by chronic fatigue and other conditions post-covid, I hope the social model of disability, rather than the medical one, is appreciated more. This pandemic hasn’t been burdened with the same stigma as the HIV/AIDS crisis and I’ve been struck by the public sympathy for phenomena like brain fog which occurs in a whole host of other conditions, including depression.
This isn’t a treatise against diagnosis, but rather a plea that the individual should not have to navigate labyrinthine processes, costly on the body and the bank balance, to be adequately supported.
* Here, I’m adapting wonkily from a Virginia Woolf quote that was the title to my A Level coursework and has been rattling in my head ever since. There’s a path lit by a series of lamps in my local Finsbury Park that snakes around the middle. I was finally able to make use of it the other week, walking at dusk with my housemate; I don’t walk alone there when it’s dark.
“Life is not a series of gig lamps symmetrically arranged; life is a luminous halo, a semitransparent envelope surrounding us from the beginning of consciousness to the end.”