Elaine Axten: Diagnosis



The following is an edited extract from Different Day, a book that we hope will be published soon.


Chapter One


"When the dog dies", I thought, "I could move into that little home for retired teachers in Rottingdean."

I spotted it on a visit to Kipling Gardens and Googled it when I got home. It's a low-slung Georgian building across a little green from the walled and segmented Kipling, beside the village duck pond. The village itself is sheltered in a dip set back from a break in the cliffs, and although the coast road ploughs through it and there's plenty of traffic, it still manages to feel sleepy, cosy and quiet.

I imagined myself peacefully ensconced, having interesting conversations with geography teachers, for instance, and then, when I tired of them, I could have a little walk in Kipling, sit by the pond, or go and sit in silence with the nuns over the road.

I based this fantasy on the lifestyle of the artist Yayoi Kusama, who famously lives in a mental hospital when she isn't travelling the world showing her work. I imagined submitting myself to the ministrations of an institution as though it would be like lying back in a warm sun-dappled bath.

Kusama works in her studio every day, though, away from her hospital.

And when I shared my thoughts with friends they pointed out all the things I wouldn't be able to control: the smell of cleaning products, harsh communal strip lighting, the constant hazard of unwanted interactions and booming and distorted noise from residents' televisions and radios. Snoring and hacking and coughing and chewing.

One thing I overthought to death, for the purposes of fleshing out this fantasy, was the issue of food. I tell people I'm a vegan but that doesn't describe my dietary needs at all. I'm a picky eater – can’t eat this, only that – and faddish – gone off it now from the moment the food's entered the fridge. I worry about the planet, and I worry about suffering. I also have sensory and digestive issues. Can I handle the sight or smell of that food? How does my mouth feel about it? What happens when it reaches my gut? Will it give me diarrhoea?

Unless I became especially friendly with the cook I'd be in a perpetual state of anxiety.

*****

"Who am I any more?"

I asked myself this at various points along the way.

"Who can a person be, after the point of collapse?"

"Who am I after losing all my constructions, so meaningful and defining?"

"Who can I be without ordinary health and without energy?"

"Am I even alive in the normal, socially constructed sense of the word?"

I eat and sleep and shit, but that's not life.

And then, later, on top of those, the same questions everyone comes to eventually:

"Who am I now I have aged?"

"Who is this later iteration of self, having certainly lost youth and even the expected but having not been granted the vigour and agency of middle age?"

"Who am I in this body as it is now? In this mind that can only function so fleetingly and only in the morning and only some mornings, and never to order?"

*****

Whatever makes you different from me, and me different from my past selves, we are all, ultimately, still human. We have that much in common.

The Sufis say "Die before you die" but how many actively choose it? Hardly anyone. Mostly we change only when – and because – we must.

The Buddhists talk about the burning off of karma. I like the idea of a white hotness ridding me of all my ego-driven rubbish, leaving some shining essence behind. For the Buddhists I studied with, karma is talked about not as being what you – or this iteration of you – deserve, but much more about what happens to be whether you invited it or not.

They speak of causes and conditions with regard to the things that are in your life right now, and some of those you seem to have power over and some you do not.

Think of yourself, perhaps, as if you were a patch of ground: things will grow there, you planted some of them, while others were there before you got there, or spring up, migrating from another garden nearby or even in the shit of migrating birds. Some things you want so badly to flower never take; some things, bidden or not, take over. You have a little power here, but you didn't cause the garden to exist, you can't control the weather and it's not even really yours, you just have it for now, and it is as it is: changing slowly and quickly and then slowly again – controlled, tinkered with or abandoned to go to seed.

I made what small changes I could over the years. I tried this and that supplement, this or that drug or treatment, this or that diet. I did what exercise I could when I could. This corporeal problem wasn't the only question of identity slippage, though it was anchored in bodily failure.

It's not just: "Who is this I see in the mirror?" But also: "Who can I be now? And after all this has happened what can I do to meet the version of myself I seem to be?"

I was as constrained by illness as I had been for more than a decade but then something big changed.

At the age of fifty-seven, I was diagnosed with autism.


*****

My friend Annette came with me to the appointment. It's long, you're warned, it can take three hours.

Within a few minutes, though, I started to realise that this wasn't the opportunity to cross something off a list I'd taken it for. This was the destination. I had arrived. I was getting a diagnosis which made sense of everything and the entire framing of my life shifted.

I hadn't gone in expecting this. What I really wanted to know was whether my previous diagnosis of Attention Deficit Disorder could be overturned in favour of Complex Post Traumatic Stress Disorder – for which I had heard there may be some "talking cure" available in our resource-starved local National Health Service authority.

The assessor drew three lines along a piece of paper. One she labelled ADHD, one PTSD and one autism, with zeros and 10s at either end of each line. She asked me where I'd put myself on the lines and I drew some Xs. We talked for a little while longer and I asked her to draw where she'd put me on the lines. This was the moment of clarity. But there was a plot twist, because her crosses were all at the higher end, it wasn't either/or, it was this and this and this. I asked her why.

She told me that PTSD was almost inevitable for neurodiverse people; from family and school's expectations in childhood, from the emergent social and sexual relationships of teenage years, from being unsupported in education and overwhelmed and gaslighted at work to the big trashing of executive function in time for menopause.

This all happens whether we are diagnosed or not. And it happens in a very particular way if you're not diagnosed. There will be bullying and exploitation, and there will be trauma and you won't know why. She also told me that people with ADHD have a tendency to experience trauma at a lower trigger point threshold than the general population, and because of a lack of boundaries around risk avoidance we're more likely to get into dangerous situations. With autism there's a lack of awareness. She called it "naivety", which means that autistic people are easily bullied, exploited and abused. If you have both and you're not diagnosed imagine how much support you get, and how lost you might feel in the world.

Lacking actual war experience, disasters and other big traumatic markers for PTSD, the chronic nature of Complex PTSD can go unnoticed by healthcare professionals.

Experientially it's inevitable. No one knows what an untraumatised neurodiverse person looks like.

*****

I was too ill, for years, to do any sort of paid work so constantly had to prove my infirmities to get benefits. After one particularly long battle with government agencies and their proxies I won a case which involved getting quite a bit of backdated money. One part of this benefit is literally called Daily Living and is designed to help with the extra expenses of living day to day when you are unable to work because of illness or disability or else are only able to work if extra help is had with what is known as ADLs – Activities, that is, of Daily Living. My life had been on an extra painful hold of privation and a frank and endless fear for years because of having had income granted then withdrawn then granted then withdrawn again on the despotic whim of assessors employed by agencies commissioned by governmental departments who, in using proxies, then had what they call in American crime dramas "plausible deniability".

Being ill, of course, and poor, the fighting times were hard. My conditions continued to be debilitating, and, beyond the raw pain, I'd been living very badly indeed. Getting back pay was both great – who hates a windfall? – and awful, since nothing I could buy would retrospectively give me ease of suffering for those lost years.

*****

By 2006 I was failing at work. I was phoning in sick a lot with a string of what sounded like excuses, and when I was at work I couldn't process the information I needed to be able to do routine tasks like marking and paperwork. I'd had what I thought were unrelated minor ailments which were persistent and overlapping. I had a constant back spasm which wouldn't go away, raging irritable bowel syndrome, jaw pain, interstitial cystitis, increasingly frequent migraines, insomnia, and mounting anxiety.

One day I went to the dentist and had to hold a bite blocker in my mouth for the short duration of an X ray. The next morning my jaw had flared up so much I couldn't open my mouth. I phoned in sick. After several weeks in bed I began the process of what they called "graded re-entry" which sounds very formal and somehow trustworthy and real. The idea is that you go into work for a few hours a week and gradually increase them until regular hours are resumed.

Over that summer I took a different job working in a theatre as a follow-spot operator, thinking that this sort of work might at least get me used to going to a job every day. I had been prescribed the lowest dose of diazepam, and was taking half of one each evening so that I could get in and out of the space I worked in (which involved wriggling into a box).

One day I went to the doctor to get a repeat prescription and my own GP was off, so I saw a locum. She told me I was an addict, and that she would not prescribe diazepam, and she gave me Prozac and told me to stay on it for "a good long time". I left the surgery in tears knowing that this would jeopardise my theatre work. What I didn't realise was that I would have such a strong reaction to the Prozac that I would become psychotic. Serotonin Syndrome? I don't know. During the time I was on it September came around so I tried to go back to my "real" job, teaching in a local college, where the occupational health assessor told me "I can’t allow you to teach classes in that state" and sent me home.

I never worked again.

I went back to the doctor and saw the head of the practice. I told him what had happened, and said I wanted a referral to a psychiatrist. I was not against taking psych drugs, and I believed that if I was assessed by a specialist I might get prescribed medication that would help me regain my sanity and save my career.

When my appointment rolled around I made my way to a decrepit building, St Clement's – previously a workhouse, and now luxury homes – and sat in a waiting room which managed to be both dark and overlit, thanks to a combination of original wooden panelling and strip lights. I sat there for a long time watching the staff. Eventually I saw a doctor come down and talk to one of the receptionists. I heard her saying she could send me away and he said no, this lady's been waiting a long time, I'll see her.

Saal Seneviratne was standing in for the then head of psychiatry. Usually, as I know now, you are assessed by the senior psychiatrist then you never meet them again, but Sene saw me a lot – in between the CBT sessions he'd arranged and claimed he was "softening me up" for – and he tried me on various meds. He'd been at uni in Leeds at the same time as I was at art school in Liverpool, and we talked about the bands we'd seen. Even now he plays jazz in pubs.

He was pushed to diagnose me, and reached for the American DSM – the Diagnostic and Statistical Manual of Mental Disorders – where he found something suitable enough to be going on with.

One time he asked me how I felt about a diagnosis of neurasthenia, which I looked up when I got home. I liked it a lot because it was antique and could only be suffered by gentlewomen. The treatment suggested was to have your maid send away visitors, to stay in bed, and to drink hot milk. There was thought to be a correlation, at the beginning of the 19th century, between the rush of modernity and sickness in feminine subjects. Working-class women were, of course, excluded from the malaise.

It so happens that I still know Sene, and I know very well that if the construction of neurodiversity had been available to him at the time he would have diagnosed me with autism and perhaps ADHD there and then. As it was, I waited another twelve years.

I was grudgingly given a diagnosis of fibromyalgia soon after that which seemed to cover the physical stuff, but that didn't help me much – there’s little research and no treatment for that either, and I still had time to be shamed by a psychiatrist asking, after my therapy: "Have you addressed your psychosomatic pain yet?"

*****

I had both a computer and an internet connection at home and I had spent the previous few years teaching digital art. I didn't go anywhere much apart from medical appointments, and when I had it in me to do so I began to explore the new Wild West – the blogosphere. Over the time I spent there I got to know one woman, Liz, in the US who was in a very similar situation to mine. She was diagnosed with ADHD and the meds really worked for her, and suddenly she was off the internet! Having a life!

I wondered if this might be a fit for me, but thought that if I asked for a referral there'd be no one to refer me to – the idea that an adult woman could have ADHD simply didn't exist at that time in the UK. This is hardly surprising, since, in the same way as we think autism is about mute boys flapping their hands, the commonplace view of ADHD is of hyperactive boys disrupting classrooms.

The name doesn't help – it's not really about a deficit of attention, more a difficulty with switching attention, an inability to re-focus once focus is lost, and a huge issue for ADHDers is time blindness. Because of our relationship with focus the idea that, for instance, we have an appointment sometime soon can be extremely distressing. We know we can be distracted, but it's inappropriate to wait in silence for hours before going, and if we start doing something else we might forget to go.

When I moved to Brighton in 2016 I thought: "maybe the time is now?" Mental health services in Brighton are skimpy, but the big advantage is that you can self-refer, cutting out a potentially awkward conversation with a General Practitioner. I got a referral to Neurology easily and didn't have to wait long for an assessment. Box ticked. I was enthusiastic to try the medication. Maybe now I could have some energy and function and reclaim my life?

I spent a year trying less and less effective medications in the vain hope that the side effect of a jaw that clamped and triggered constant migraine might be resolved. It was not. I got a glimpse of a diamond world in which my brain was clear but the dank fog of migraine mostly obscured that light and none of the medications I tried were sustainable.

I had the impression that the one thing you could get talking therapy for free for in Brighton was PTSD, so I thought I'd rather have that than nothing and asked Jo, the practitioner who'd diagnosed me and had been treating me, why she thought I had ADHD and not CPTSD. She suggested meeting with a psychiatrist, which we did, and towards the end of the second appointment he started asking me questions I hadn't heard before, like: "Do you have a television show you watch over and over again?"

Why was he asking me that? Doesn't everybody? I used to have the sheepdog trials on VHS and had read and seen the TV adaptation of The Camomile Lawn numberless times. I was enthusiastic to share this information with him but he wasn't interested. Then he asked if I minded being screened for autism. This came as a huge surprise, and I thought it wasn't a likely fit, either. Like my understanding of ADHD, my knowledge of autism was limited and erroneous. I thought that the screening would be a matter of elimination before getting back to the salve of talking therapy.

By the time I went for assessment, then, I was in the same boat as so many late-diagnosed women. I had a slew of physical ailments that had been connected to my mental state as "psychosomatic" and I had been thoroughly patronised along the way. I did not, however, believe I was autistic – unlike so many adults who spend years anxiously waiting for formal diagnosis.

After diagnosis there is no aftercare and there is no medication. I cannot stress this strongly enough.

The diagnosis is the treatment. No one should have to wait three years for an assessment.

Within a few days I had immersed myself in YouTube videos and acquired a glossary with which to label the experiences that I had no words for previously. Over the next year or so I mourned for the life I could have had if I'd understood myself better, but most of the time I got to know the tools for managing my life now, as it unfolded in the present.



You can read more of Elaine's writings here.