Another Millennial with ADHD (oh and Autism too)
Because clearly I needed to be 'trendy' with something
I didn’t intend to write this right now. But life has a way of intervening, and perhaps it’s actually a useful thing to document the process, not just some point of hindsight down the line. So here it is: before Christmas, I discovered I have ADHD, and within the next week, I fully expect to find out I’m Autistic too.
Ideally, I would be writing this after finding that formal diagnosis, but really I don’t think any adult gets this far in the arduous and expensive (if you have the privilege like I did to go private) without a strong sense that their self-diagnosis is right. And as the diagnosis is difficult, expensive, and a privilege, self-diagnosis is valid. Events out of my control this week meant I had to ‘confess’ or ‘out’ myself for Autism too, so here we are.
A full set of disclaimers on this blog: I’m not an expert, these are my experiences. I’m aware too of many of the debates around a diagnosis that rage currently in both these areas, and I may well choose to speak on those at a later date, but this is about my personal experience to date.
So why did I seek this diagnosis at the age of 38? What do I hope to achieve? What has it been like so far? And how am I feeling?
I’m not sure I have the answers to those complicated questions, but here goes.
Firstly, why now, and how did I think this might be something to look into?
Short version: TikTok and the internet.
Long version: years of suffering and disasters.
Short version: Yes, I’m afraid it’s me, I’m the problem, it’s me. I’m another one of those ‘saw a bunch of people online talking about their ADHD and Autism and thought ‘it me’’ just for content and to be trendy. Obviously, the latter is a lie; I’ve never been trendy a day in my life. What is true is when I finally joined TikTok last year (which rather proves my trendy point), I accidentally found myself down a rabbit hole of ADHD and Autism.
But let me clear something up here. No non-Autistic person sees a couple of videos about Autism and goes ‘lol it’s me’ then spends hours, days, and months reading everything they can find about autism before painstakingly researching their diagnosis options. Non Autistic people go ‘lol it’s me everyone’s a bit Autistic lol’ and move on, maybe making a couple of problematic TikToks. So while yes, TikTok (and other social media platforms) were the jumping-off point (And a huge, huge help in signposting resources, explaining things, and generally being an anonymous support network) they are not the reason for me seeking diagnosis they are the catalyst. And I’m thankful for it.
Long version: I’ve struggled so much in everything. In particular in work and friendships. Not necessarily in my ‘vocational’ work (writing and researching) but in my ‘day jobs’ and ‘career jobs’ and generally, anything that involved being in an office. (I’m weirdly good at customer service, having learned to mask extensively, but that’s another story). I don’t have the space here to go into the details, but work life has been for me an unmitigated disaster. I was sick of feeling judged for that, sick of feeling like a disaster (beyond the general Millennial-age disasters we all collectively are). And sick of the broader impacts on my mental and, indeed, physical health. So after feeling that I was just broken and nothing would ever be ok for so long, I started to put pieces together and do something about it. After too, so many of the coping mechanisms I thought should work just didn’t I decided to see if there was something else I could do about it.
In terms of ADHD, that was actually a lot simpler, and one that actually is easier to talk about as already understand the impact of that somewhat clearer on my life. I was diagnosed with Dyslexia at 21, in my final year of Uni (thanks to a very helpful observant tutor). But despite that, nothing I ever learned about dyslexia coping mechanisms ever helped. Not one bit. But when I started learning about ADHD, I realised: I’d been trying to cope with the wrong condition. No wonder all the coping mechanisms for dyslexia didn’t work; I was applying them to ADHD. The tipping point for me came this year when I royally fucked up our holiday. Our first in 2 and a half years. I fucked up Mum’s visa, and I fucked up our hotel. Ending our travel day in tears, I knew this wasn’t a dyslexic mistake but something else, so I made the decision to get assessed. And now at least, I can start to unravel what dyslexia coping mechanisms and adjustments don’t work, and start to apply ones for ADHD instead. This feels straightforward and logical because I’ve been adjusting the way I work for dyslexia for the last decade and a half. So at least there feel like concrete steps to fixing that, coping with it, and adjusting life.
That said, I am not playing down the trauma- and yes, the trauma- of this here. Finding out I was dyslexic after completing all of my education was bad enough. All the things I’d been told I was ‘lazy’ or ‘wrong’ for could have been avoided. Now, another decade and a bit later, similarly, all the things I’ve been told I was ‘lazy’ or ‘lying’ about (looking at you Ph.D. supervisors) could have been avoided. It could have been accommodated and coped with. I can’t help but think, would I have had the academic career I’d wished for if I’d been able to be accommodated? Maybe not, but I’d sure as hell have had a fighting chance instead of no chance. Similarly, how many job applications or interview tasks did I fuck up because of this that could have changed the course of my life? So while ADHD feels like a practical thing that can be accommodated in many ways, worked around. In general, supported. That doesn’t undo all the shoulda-woulda-coulda of it all and the actual bitter hurt that, wow, my life could have been different if I’d only known the same time as my dyslexia (I actually don’t think ADHD massively impacted my childhood/schooling in a hugely negative way, so I’m just going to be personally angry at it for stealing my career chances to this point).
That said, one thing I wish I could change, which sort of overlaps with both, is rejection sensitivity disorder. I cannot tell you how frustrating a revelation it is to know not everyone feels the same level of devastation around rejection as I do. I’m not talking ‘your book got rejected by a publisher have a cry’ rejection or ‘didn’t get the job you wanted’ rejection, have a sulk. Everyone gets that. I’m talking the deep dark introspective ‘there’s something wrong with me, there will never be anything good again’ dark pit that comes with those ones. But really what’s worse is the tiny tiny rejections of everyday life that destroy me. A tiny perceived error in work, or a friend being too busy to talk or hang out. A badly worded bit of feedback. A less than ideal (in my head) social media interaction. All feel like huge devastating rejections that consume my brain and throw me into despair. So that, that’s the main one I wish I’d known was a thing too. Because again a step to coping is knowing what it is, that you’re not just dramatic (I am) but there’s a reason for it.
And obviously, there are more nuanced elements of ADHD to cope with. But largely, it feels like a very pragmatic cope-able thing down the line (again for me personally). It’s something that has clearer parameters, and despite my bitterness at trying to cope with it with the wrong resources for so long, that feels fixable. Not even fixable workable. Even to utlise its advantages of it- the hyper focus, the way of seeing things. For so long, I was bitter that I didn’t have any of the ‘really cool skills’ of dyslexia, but maybe I do have the cool skills of ADHD, and that’s ok. I’m ok with that. I can work with this now I know what this is.
I’m reluctant to unpack the Autism side before I have a formal diagnosis and before I myself have time to truly unpack all of it. I wasn’t planning on talking about it so soon. But I will say this again is my personal take on it, so please don’t come for me. ADHD feels like something I have, the same as dyslexia, the same actually as my Ulcerative Colitis (also a shit disease. Boom boom. Google it if you don’t get the joke). But Autism feels like something I am. So I guess if we’re comparing things, Autism is like being queer, being asexual; it’s part of me and makes me who I am. And that’s not a bad thing always either, in the same way, that queer and asexual are, it’s not me that’s the problem. It’s being within structures that don’t accept and accommodate me that are the problem.
The other coming out similarity is the ‘oh we knew already’...to which I paraphrase an old Will&Grace line of ‘well you could have told me’....seriously though, ‘oh we’ve always thought you were’ is not a helpful response. It not only minimizes the trauma of going through the process, but it also really reduces the person’s experience to ‘well, it's so obvious’ and makes them feel stupid for not ‘knowing’. So like, just don’t.
Talking about outings, too, you shouldn’t expect neurodiverse folks in your life to disclose it to just anyone. Or if you don’t know them very well and don’t know their comfort level with people knowing, don’t tell them. Like I don’t start every new friendship or work encounter with ‘Hi I’m Emily I have Ulcerative Colitis so I poop a lot’ because it’s not relevant and makes it super awkward for everyone. Similarly, my neurodiversity is not relevant to every encounter, so I don’t have to bring them up unless I feel ready to.
Much like being queer too, talking about Autism is a coming out, and not something anyone should be rushed into. Do I feel a little bit like I was ‘outed’ this week? Yes, actually, and that’s a tough thing to sit with. Ultimately I made the call to ‘out’ myself, but I wasn’t ready, but my hand was forced a little, and here we are. I feel lucky, too, that coming out twice already has equipped me for this, both in the language and ability to talk about it and the resilience to deal with it.
Coming out (twice I’m greedy), too, has enabled me to feel comfortable talking about this online, despite knowing there may well be backlash. Again I have both the language and resilience to do it, and the knowledge that it is my call. Also, I get to control that narrative. Nobody has a right to it but me or what I share of it. But also, like being visibly queer, being visibly neurodiverse on the internet might also help others.
I’m not here to sell a shiny version of this the same I’m not with my queer experience. I hope to share my joyous neurodiverse experiences, too and show that actually there’s so much more than the struggles.
But I do also want to highlight the struggles. Because I’m aware even in just writing this blog, I’m opening myself to ‘oh but you’re not that Autistic’ comments or that feeling I have already that I’m not the right kind of Autistic on various ends of the spectrum. And let me say that, yes, I feel very privileged that this disability has not held me back so much in life that I haven’t been able to do things and succeed and have friends and all manner of things I know others do not. I am very aware. But that doesn’t mean I don’t struggle. So a story about meltdowns for you to illustrate that (TW descriptions of some self-harm).
At some point before Christmas, I had been feeling frazzled, in a sense of really unraveling, in a sense that I’m now slowly starting to understand. I left the house in tears for an in-person work event. I got there, put on a face (mask) did the thing, functioned, and interacted in the full-person mode for however long it was (I actually forget how long). I came home, and some invisible trigger hit me, and I had a full meltdown. We are talking, sobbing, wailing on the floor, bruising my legs and knees. We’re talking about hurting myself (biting and scratching) and after low-level self-harm too. Then I literally picked myself up, finished my work day, went out to a theatre event in the evening (which is also work), and fully ‘humaned’ there too. Nobody I interacted with that day would have had any idea beyond maybe ‘she seems tired and quiet,’ but I doubt even that. Someone my age, who presents as perfectly competent with a job, and many a side hustle and friends isn’t supposed to break down and scream-cry on the kitchen floor. They aren’t meant to hurt themselves that way. I have shared a lot of my personal shit on the internet over the years and I’m most ashamed of that. I shouldn’t have to be, but I am. But I also share it to illustrate to anyone who thinks ‘well how bad can it be’ that some of us (women especially) are so good at concealing, working around this part of ourselves and the impact it has, that you’d never know. That day took me days to get over, too, the exhaustion that happens with a meltdown is as bad as the meltdown itself. But again I continued to human, and nobody would have known beyond ‘she looks tired’.
I share that to highlight this isn’t a kind of ‘jump on a bandwagon’ or ‘justify my career failings’ or ‘you’re just a bit quirky really’ diagnosis. It’s a serious situation that has massively impacted my mental health clearly for much of my life but crucially in the last few years that caused me to seek this diagnosis. And yes of course, I want to justify and solve my employment options. I also want to feel comfortable celebrating my quirky side (I generally am but even the chief weirdo that I am holding some of it back). In short, I want to be able to be myself.
But I also want to do it on my terms. So in the words of Eliza Hamilton, ‘I put myself back in the narrative’ instead of letting circumstance, and people who aren’t entitled to it, take it from me. This is an ill-formed brain dump of a thing that is the first step in allowing me to do that. And mixed in with the queer stuff and cultural stuff will be more neurodiverse stuff.
A final note on language too, as this is the queer notebook. Personally, I prefer Neurodiverse, much like I prefer Queer. Not just because it’s a good word (it is) and not as a euphemism or because I’m hiding anything. I choose queer because I am a mix of queer identities so an umbrella term works for me. Just like I’m a mix of neurodiversity, an umbrella term works. Equally in both, none of the individual identities seem to accept me as their own, I’m always too much or not enough of each. So I’ll be like my queer self, a mix of them all.
I hope to share more as I work through all this. And hey if someone waves a magic wand and says ‘you’re not Autistic’ all the better we’ll go on the journey of ‘what now then’...but I figure as readers of this blog a few of you might be interested in this experience too, so I’ll continue to share it.
Another Millennial with ADHD (oh and Autism too)
Coming out about neurodiversity and speaking about it publicly is not only an act of courage, it's also does help people so thank you. I too have recently started on the path (long and hard) with the NHS to get a diagnosis for ADHD. The catalyst for my journey was someone who I had just met (for some bizarre reason) telling me they had the condition. It started a conversation and I thought "That's my life". It's important.