Alexithymia has some benefits. Or, at least one. When I say I don’t know how something makes me feel, I know that I’m telling the truth. I don’t have uncomplicated access to my feelings. If I ‘know’ how I feel, it’s through hindsight and the analysis of prior events and their outcomes from a distance. If I’m trying to anticipate how a future event will make me feel, I do so through the prism of past, possibly comparable experiences. In short: I don’t have a consistent ‘gut response’ about what happens to me and I’m not attuned to or often even aware of my physiological responses. And even when the sea seems fair, when I do manage to land my whaling spear, the squirming eel of a feeling doesn’t stay in my grip for long. It soon snakes away, whilst I desperately jot down its markings, how many teeth it had, its age, its length, so I can try to consider it further; place it in my bestiary of imagined feeling and assess it further. In short: feeling isn’t often physiologically and experientially straightforward for me. And I remember learning somewhere — though I can’t remember how or when — that alexithymia most clearly presents itself in ourselves when emotionally overstimulating events take place. It’s not so much that the feelings escape detection. Feelings can drown the entire sensory apparatus — but you can’t see the water submerging it. Cause(s) and/or effect(s) aren’t evident and, for all intents and purposes, everything is still seemingly hunky dory (NB. nothing is ever actually hunky dory; never in all of human history have we achieved actually-existing-hunky-doryism). But then you begin to wonder: why is there this fog descending on my mind? Why is my sleep more terrible than usual? Why are my behaviours changing? Why do I want to call for help? Alexithymia, at its most distressing, makes the uncertain division between mind-body and self-mind confusingly apparent. Over a long-period of time, alexithymia helps cultivate a relationship between self, bodymind, and being-in-the-world that is fundamentally rooted in distrust of oneself and a sense that all my experiences require evidenced justification — that my feelings happened, that they were caused, and that they should be allowed to happen.
That’s alexithymia. And alexythimic is how things were when I received my Autism and Attention Deficit Hyperactivity Disorder (ADHD) assessment report last week. Turns out I’m not only one of the 1-in-100 of the UK population with autism, but also one of the 3-in-10 autistics who also have ADHD. Fun! (NB. it isn’t fun a lot of the time).
I’ve already covered the how, what, and why of me seeking a rediagnosis of Autism and ADHD. Suffice it to say, the NHS has provided me with a patchy and damaging medical history — diagnosing me as autistic in 2004, removing that diagnosis apropos of nothing in 2006, and then claiming I was autistic in 2014 (to my great surprise) during a CAMHS appointment about Major Depressive Disorder (MDD). Until that CAMHS interview in 2014, when the senior mental health nurse made a concluding claim that my depression was likely impacted by the obstacles I faced as an autistic, I had no idea — no inkling whatsoever — that ‘autism’ and ‘Christopher’ had ever appeared in a sentence together. Three Freedom of Information Requests later, from 2019-2022, and an NHS complaints procedure (2021-2022), I have now learnt there are at least 240+ documents that document the process behind my initial diagnosis of autism and subsequent, still unexplained ‘undiagnosis’ (2003-2007). My diagnostic history with ADHD, too, has been similarly patchy and inadequately explained, if explained at all. I’m sure I’ll write about that whole experience and the role of the NHS at a later stage. For now, that brief recap is important only as foregrounding: it was an ambiguous, uncertain, and distressing medical history that spurred my desire for clarity.
I know that people across the UK are waiting up to five years — if not longer — to be assessed for autism. Therefore, I am privileged to have only waited six months for my recent ADHD+Autism assessment in March. I did receive my assessment through a private clinic. I sought this avenue of assessment for three reasons:
1) The long NHS waiting lists/times.
2) My complete distrust of the NHS when it came to autism + ADHD.
3) Because I could.
Regarding that third point, I paid for my clinical diagnosis independently, through the work I’ve been doing over the past two years as a tutor for The Brilliant Club and the University of Warwick, as well as my freelance writing (you can find some of that here and here); I was only able to slowly accrete that money because I am currently receiving a UKRI Studentship for my PhD from the Arts and Humanities Research Council. In short, great privilege has enabled me to get answers that can offer some relief.
After reading the report several times and asking those close to me to give their opinion of it, I think I’ve found my feelings. The report is, understandably, clinical. As such, it is necessarily rooted in what Nick Walker calls ‘the pathology paradigm’. It’s hard not to read it and feel like I should have taken Christian Bale’s place in American Psycho /jk.
Some choice clippings from the Autism-ADHD Diagnostic Report
‘limited imagination’, ‘unable to provide functional, symbolic, or creative use of objects’, ‘very limited variation in facial expression, with these being limited to smiling or looking distant’, ‘regularly his responses were intellectualised and related to literature […] [he] often related his responses to the literature that was available’.
Although I’ve improved a lot since 2014, it’s still difficult to look at myself as autistic. In 2014, this was largely due to an NHS nurse stating ‘you’re autistic’ and not explaining how, when, or why that was decided, and by who — all with the tone of somebody who thought this news would be blindingly obvious to me. Now, my difficulty with seeing myself as autistic is partly because the report acknowledges aspects of myself I know to be true and which I’ve worked really hard to hide. In short, I am ashamed to be disabled and ashamed I can’t hide it as well as I thought I had been doing. This isn’t an entirely new revelation. My own internalised ableism coupled with my high expectations of myself has long been clashing with the knowledge that I can’t perform ‘normality’ without it being exhausting and damaging to my mental health, self-esteem, and self-efficacy. The performance of normality, after all, is the root cause of all success (after capital, of course). But this report has made things clear in a new way: you’re fooling nobody, Chris. You’re autistic mate, and you may as well try and be as true to that as you can, rather than bend over backwards to pretend you are the ‘imagined normie’. Q) Whose to say the imagined normie is tantamount to success? A) Well, pretty much everyone — the tyranny of the imagined normie means everyone works towards and as part of a conformist ‘floating of all boats’ that doesn’t actually work for many people’s social and economic wellbeing. Q) Okay Chris, but whose to say you should force a dodecahedron into a triangle shaped hole? A) You’ve got me there, that’s a grotesque image — maybe we should understand success beyond the confines of a rigid professional careerism or, at the very least (baby steps), not be so harsh on myself? Q) Yes, sounds like a plan, Stan. Fin.
Related to that little back-and-forth I just had with myself there: I don’t want to temper my ambitions because of the difficulties I face as an ADHD-autistic… That being said, the impact academia has on me often makes my life a depressing, isolated, and exhausting ordeal, precisely because of the masking, the performativeness, and the sheer unceasing uncertainty of the whole enterprise. These are all things for me to reflect on further, as I continually attempt to hold my life up and ask if this struggle is really worth it. Or are there greener pastures elsewhere…
For now, it’s safe to say that this report is a turning point, existentially and medically. It provides me with something clear and authoritative: ‘you’ve got more than a touch of the ’tism, my friend!’. From here, I could develop a kinder relationship with myself… if I put the work in and got some help. It’s also a key. I now can open the door to a new, undoubtedly bureaucratic and tedious labyrinth: ADHD clinics and pharmaco-psychiatric interventions. I feel great trepidation about how medication could impact who I am. I don’t feel confident that it can minimise the disruptive, damaging, and depressing experiences and enhance the elasticity and creativity of my ADHD-autistic Ideaspace. No ‘Goldilocks’ drug(s). In recent memory, tempering my mind into something more productive is admittedly very hard. But that same mind fizzes and crackles with ideas and possibilities that ADHD medication may prevent from happening. Perhaps medication could be used selectively — when I have to turn the products of my mind into something legible, I could take medication that makes writing my ideas — forged in the chaotic furnace of Autism-ADHD — possible and more efficient.
But what does that then do to the style of my writing? I know, instinctively, when I am marking an autistic students’ work — because of the style, because we often — though not always and certainly not all autistics — can use language in such inventive, playful, recombinative ways, with a confident, unique idiosyncrasy. I like the way autistics write and I don’t want an ADHD drug to nullify that.
Let’s wrap this up. I still have many questions (quelle surprise)! But they are new questions: could ADHD medication help me? Should I experiment with medications during my PhD? Can I develop a more positive relationship with myself as an ADHD-Autistic? And I am, of course, in possession of new answers: I am autistic, I am ADHD. And the disabling aspects of being Autistic-ADHD are not entirely my fault. Our workplaces, institutions, and communities create obstacles where they need not be. It’s not a case that we should be seeking social and economic equality for the disabled. We should seek social justice and practicable outcomes through a fundamental recasting of our aesthetic, social, economic, political, and ethical priorities.