12 Days of ADHD 5: How Did I Get Here?
Thursday 21st October, 2021
October is ADHD Awareness Month. I've decided that I'm going to use that as a writing prompt, and to set myself a challenge. For the next twelve days, I'm going to write something about my experiences learning about ADHD as a very recently diagnosed adult.
First of two questions I've been asked whilst sharing my blog posts:
"How did you go about getting a diagnosis?"
This one is long, I spent a good 3 hours of writing. I guess this is the post where I just share everything. When I started, it was only a couple of headers, and I thought it would take 30 minutes, but... here we are. BUCKLE UP
Pathway to Diagnosis
I always felt a bit awkward, clumsy, distractible and what have you. Weird flex, but I was evidently one of those Twice Exceptional™ kids. In some ways I struggled a lot, but masked it and made my way through reception, primary school, secondary school, sixth form and my first year of uni with my own coping mechanisms in place. Academically I was fine ("when I applied myself") but socially was where I struggled; felt (still do) like I was falling behind, like there were all these social rules and scripts I wasn't quick enough to notice. I always brushed it off as just the human condition; we all get like that sometimes, I'm just feeling what everyone else is, I just need to improve myself. It'll all be fine when I'm fit and healthy and have lots of fulfilling hobbies and relationships and feel comfortable in my own skin as the colourful extrovert who's hiding in a meek introvert's skin...
(...sorry, didn't mean to go all Hannibal Lecter there...)
I think I was lucky with sixth form and university, because I had subjects I found really interesting, so when needed I could hyper-focus and get work done to a good standard. Somehow exams don't phase me either; I've never needed nor wanted extra accommodations in exams, so I'm lucky I don't get distracted there. (So clearly it must all be in my head, right? I can focus, silly hypochondriac I am!) Sure, I'd get in trouble occasionally, usually for presentation of work, "backchat", being disruptive, not doing homework, and most of all just showing up late to things. But the content of what I did was great.
But, then came my placement year - my first taste of Gainful Employment. The first place where performance reviews and meeting other peoples standards suddenly became very important, because the future of my career (and more imminently, paying rent) depended on Being Good. My line manager took me aside on multiple occasions to talk to me about turning up late in the mornings, doing stuff that was clearly not work in the office (I liked having Facebook and IRC open to talk to people, ok, sue me), missing important details in pieces of work, only picking up on half sets of instructions.
(The one thing that makes me laugh now in the report is where I got marked down because sometimes I didn't do work unless I was "explicitly" asked to do it... Whilst I would appreciate self-motivation, I definitely don't expect my colleagues to do things just because someone mentions it in passing. Like, goddamn, be direct!)
I was a paradox. Seemed to be in my manager's bad books a lot, and it really frustrated me at times when I felt like I really was trying my best but making careless mistakes. Yet, at the same time, I received thanks emails from the PhD students and researchers who I was producing data for. One of them gave me glowing praise, something like "and I hope you keep this student on".
That year I felt like I had my first tastes of burn-out. The winter sucked. I was lucky enough to be living with one of my closest friends, working in the same place too, and they understood my troubles - but when I compared myself to them, they were thriving and everyone loved them in work, and I was their quiet, clumsy counterpart. I was really anxious and exhausted for a few months and no matter how many to-do lists I made, I was muddling through. I started looking for reasons why I had difficulties with things, without knowing the reasons why, which just sounded like excuses to other people. I wanted answers.
Close, but not quite
At the time, I had a tumblr blog, friends from uni had tumblr blogs, some of whom were autistic, and followed and re-blogged lots of stuff from the #actuallyautistic tag and co. There were posts there that really resonated with me. Which makes sense, looking back - there's a fair bit of overlap between ASD and ADHD, when it comes to things like sensory / processing issues and executive (dys)function. I got excited, have I found the people who really get me? And it spurred me on to try and seek out a diagnosis - Asperger's! That must be it!
At the time, I wouldn't have considered ADHD at all - it was something I was barely aware of, but what I did know about it was it was little kids bouncing off the walls, too many are being diagnosed, it's just caused by blue food dye and too much sugar, blah blah blah. Meanwhile, seeing that autism was a spectrum, I tried to apply what diagnostic criteria I could from it. Interestingly, I did do the Baron-Cohen AQ test and scored just above the "threshold" a few times. Weirdly, when I revisited that test at age 28 I scored waaay lower. There was another test I recall doing, which was much more thorough than the AQ test and plotted your results as a star graph, I can't for the life of me find it now though, alas...
But I was convinced enough that it was worth exploring that I went to see my GP. No idea what I said in that appointment, but it was enough for them to see that I was struggling and gave me a referral to a psychologist. As I recall, that was a 50 minute conversation several months later. The psychologist could see that I had "traits", but didn't present as an autistic person, scored border-line on the tests, and I didn't have historical evidence to help their assessment. They suggested that I should try Cognitive Behavioural Therapy because I was clearly quite an anxious individual.
CBT that year was: one or two sessions with my GP, and sent home with a CD of relaxing ocean sounds? I can't remember at all what it was. I remember feeling pretty embarrased and hypochondriac, trying to find labels that trusted professionals told me didn't really fit me. After that, I kinda stopped thinking about it.
I climbed out of my burn-out period that year, and then it was summer, and then back to being a university student for 2 more years. That alien, maybe-I'm-neurodivergent feeling remained, quietly, under the radar. I cared less, because I was in my social circle pretty much constantly; people who I vibed with, who had similar brains, so I felt more like a Regular Human again.
CBT pt. II: Electric Boogaloo
I think for me, periods of burn-out coincide with winter, so I always assumed it was seasonal depression coinciding with the extra loneliness; most active socially in the summer when all the big exciting feels-like-a-milestone events are happening, and winter becomes one long stretch of...... Nothing...... With Christmas slapped in the middle. So, couple of years ago, back to the GP I went, being really fed up with having the same pattern. "How am I supposed to keep active and meet my social needs if everything sucks all the time?" Naturally, GP was very averse to prescribing any medication, in that way that GPs can be where they incidentally make you feel like you're thinking wrong about yourself. So they referred me to Steps2Wellbeing, the local NHS trust's mental health service. After an initial phone call, I was offered group CBT. For 12 weeks, I went to a classroom one night a week and learned about all the CBT techniques. I'm not knocking it in the slightest, but throughout it it always felt like I was being taught to suck eggs, or there was a sense of "yeah, I already KNOW I'm experiencing Negative Automatic Thoughts, you've just given them a fancy name". And most frustratingly, that the techniques didn't really work for me, because CBT, whilst can definitely make you aware of your thought patterns and how to challenge them, wasn't helping the underlying issue of my burn-out. I "graduated" CBT because my GAD and depression scales returned to below a threshold that was satisfactory for me to stop going, but I think what really happened wasn't that I suddenly learned a bunch of coping tools I'd never had before, but that I naturally came out of my ADHD burn out cycle.
You'll note I keep using this phrase burn out, which I differentiate from depression. Both can look very similar, but how you treat them differs a lot. "Burn-out" is often talked about in terms of workplace stress, and the treatment is to... reduce your workload, take time off, reduce the stressors. And proper, proper clinical depression is a whole different beast I think I'm lucky to have never had. I think depression is to serotonin as burn-out is to dopamine. You can (or at least, I have) feel happy whilst simultaneously frazzled and burned out.
I think with ADHD it's a lot easier to get burned out just existing, not just with work stuff - the job I've had for the last 6 years has not been a stressor for me. But yeah, burn-out from daily life, especially as you get older and you have more and more of your own responsibilities and it's more and more up to you to maintain your own routine, structure and be in charge of your self-care. It doesn't take much for the rug to slip from under you. Couple of nights bad sleep, suddenly you've stopped cooking healthy dinners. Now instead of going for walks you're ordering in pizza. Going for a run suddenly a big mental effort. Give up laundry, shaving, slowly become scruffier, feel tired all the time, lose enthusiasm for hobbies, then work, just dwell in a soup of self-loathing for... days, weeks or months. Until, suddenly, there's a minor change in routine, or you have a Big Plan that's about to happen, and you suddenly pick yourself right back up and all your energy is restored and you're happy again but annoyed at yourself that you have to now play catch-up. You weren't depressed depressed, you weren't sad, at worst you were just too tired to have emotions and mostly you just felt like you were hibernating -- but we obsess and worry so much about productivity (and paying rent) that hibernating is synonymous with laziness, drifting, no sense of purpose, yadda yadda yadda.
Buddies, and MEMES
Got one friend who told me they got the ADHD, autism and BPD diagnosis trifecta (oof). I believe it was them who at first was sending me ADHD memes, relating to themselves, but which when I saw, I was like "ha, well this is oddly specific and incredibly relatable..." They talked to me about what it was like before and after diagnosis (before and after meds). I think those conversations were instrumental to me starting to think seriously about ADHD. When I said as much, they sent some of ADHD Alien's comics which further cemented my suspicions. So, a huge shout out to my friend for sharing with me. Thanks, Monster™ Egg™ Factory™.
After that, whilst I was poring over serious literature about ADHD, I remember stumbling across /r/adhdmeme (and /r/adhdmemes, because of course there are two fairly active subs), and boy were so many of the top posts Incredibly Specific And Relatable again. And sure, some of the posts you could reason away, "oh but everyone gets like that", yeah true, but when it's all of them, it Makes You Think......
I was one of those people who weirdly thrived in lockdown. My life became more minimal because there was nowhere to go or nowhere to travel and no plans to overcommit to. It was an equalizer, and I struggled less with the loneliness we all felt, because it wasn't much different to before or after, and as everyone else was in the same boat, there was much more structured online video calling going on at specific routine points in the day. All of us becoming institutionalized by the pandemic for large parts of over a year helped me realise that, given enough time and space, I could be just as organised and together as everyone else. We all had our Mandatory Hour of Exercise, we all bulk shopped when we could and put energy into domestic hobbies. I had all this time to organise my space to, as it turns out, organise my mind. My spare room used to be a big random heap of junk. It turned into my office.
And of course, I questioned that. I wanted to figure out why again. I had a sneaking suspicion by now that that very enforced structure we had to our days and minimal lifestyles was helping me with what could potentially be undiagnosed ADHD.
It was interesting to see how a few friends had a similar self-reflective journey in the lockdown period. Maybe it's all because we're nearing 30, and it's a natural coming of age thing. But I think the fact we were suddenly given all of this extra time, we actually got our daily chores done and started focusing on deeper stuff.
Starting in early February this year, having not spent much money during lockdown, and expecting it to continue for a while, I invested some time, energy and money (being in a lucky, privileged place to afford it, at £60/week) into "proper" therapy.
That was what I was missing from CBT - having a professional there to just listen to me, ask me leading questions and challenge me, as opposed to trying to diagnose me or signpost me to some service or set of techniques that didn't quite fit me.
So I found a few BACP acreditted therapists close to me, and chose one who specializes in Original Gangster Psychodynamic Psychotherapy - the proper "lie down on the couch and tell me how you feel", unstructured conversation for fifty minutes, kind (although conducted over zoom for most of the year). I approached them not entirely sure what I wanted to tackle, just with a vague want to feel better about myself, to have better self-esteem, to tackle long-standing social phobias and a shitty inability to communicate highly emotional things. Like, I'd just shut down and not understand why. No rhyme or reason, not like I've had anything traumatic happen in my life, so why am I such a silly bugger with social situations!?
In the first couple of sessions, they naturally want to build up a picture of you and your background, and the process of remembering what it was like growing up and putting it into words for another person, was more motivation for me to look into The ADHD Thing. Vague memories of fraught and confusing times in school, being overtired, the cacophony of voices at assembly time when I had to stick my fingers in my ears. Paying attention by doodling. Being told off for not listening. Being told off for not making eye contact. Being told off for having no filter. Being told not to fidget. Being told I was just being difficult when I was having trouble following instructions, or being forgetful, like I was doing it deliberately.
I'm still a bit cynical/skeptical of the Jungian/Freudian "everything connects back to your childhood" thing; I don't think it always applies -- but thinking properly about my past and realising how hazy my memory was gave me further impetus to go and dig up my Primary School reports. And the psychodynamic approach is great if it turns out you're a person who really, really likes talking about themselves (would you have guessed that, judging by the length of this post?)
It was interesting to me how the first few therapy sessions for me were the final piece of motivation for me to go and seek out a private ADHD assessment. Not once did my therapist discuss anything like that and I certainly hadn't come to them looking for it -- after all, I'd reached out to a psycho-therapist, not an -ologist or -iatrist (or an -osopher or an -atician....)
I still feel uneasy today talking about going to therapy because it feels like it has this uncomfortable attachent to it. You have to be really troubled to be in therapy, right? It's for, like, people with PTSD, right?? What the hell was I doing? It's like... you have to say it in hushed tones, lest ye worry anyone too much...... therapy
So, again, a big shout out to: my generation, and the generations younger than us, who have also turned therapy into a meme lmao
And a big shout out to another one of my besties - who was also instrumental in supporting me through the early diagnosis days and is an authoritative voice when it comes to psychology, therapy and mental health: "I think absolutely everyone would benefit from therapy. It's a real shame you have to pay for it. " Thanks, Professor Eau de Smench.
And a similar shout out to my sis, in her first year of her psychology degree, loudly proclaiming much the same: "YOOO! EVERYONE should get therapy! "
After a while I got comfortable talking to my friends about it, and it turned into some brilliant conversations, like I'd opened up a bit of dialogue with The Lads.
Oh yeah, anyway... my school reports.
I'm lucky my mum kept loads of my school stuff going way back. So at age 29 I still had my primary school "Special Education Plan" reports, which... Wow. When I read through them with the ADHD diagnostic criteria in front of me as well, I was a poster child for. It's a shame that we didn't have the resources back then, just before the internet really took off, and not nearly as much on the radar by teachers to pick up on.
I saved a document of all my most relevant quotes, which I may make into another blog post. But for now, I'll confidently say that throughout my primary school years I was reportedly loud, disruptive, interrupting, argumentative, socially inept, developing slower than expected, disorganised, messy, having trouble with maths, forgetful, "dreamy", frustrated when stuff wasn't going my way, easy to temper, clumsy, appeared not to be listening, had trouble with social cues, had trouble staying sat down, zoned out in class, had trouble moderating voice, had trouble staying quiet, but also creative, insightful, funny, sensitive, caring, thoughtful -- just needed monitoring.
And the thing is -- when nobody's not sure quite why you're like that, the simplest explanation is kids are gonna be kids. And by secondary school I'd been in enough trouble that I'd learned my own ways of dealing with things, I'd developed my own means of masking. Unfortunately with a lot of self-esteem issues and a lot of anxiety.
The other thing I had in my armory was the RBANS test I'd done with bezzie whilst they were working in a memory clinic. They used RBANS on the daily to assess people with early stage dementia and alzheimers - but the use of RBANS itself is widespread from what I gather. Whilst working from theirs one day, we were curious what I'd score. Scored really well in some places, but on one of the tests I did shockingly bad - I believe it was to do with list recall. I remember taking the test, feeling like I would with trying to remember peoples names, instructions or directions. Just in one ear and out the other, only half remembered, or completely jumbled in order. They were very good at pretending that everything was going as expected, when they could see that that one test was not going well -- but I could sense their apprehension. I scored in the 25th percentile for my demographic - healthy young adult male. It's a real shame that that didn't factor at all in my actual ADHD D/x, because it is like the most objective thing I have at my disposal, and I'd love to have like, a psychologist specialising in Adult ADHD go through one of those test batteries with me again someday. It was, whilst a bit worrying, also quite comforting to know that I did have an indication of some sort of unknown working memory impairment - I wasn't just making bloody excuses, I told you so!
Having documented evidence of very very ADHD traits during childhood, and having taken the plunge going to see a therapist, and having my friend talk about going private for their ADHD diagnosis, I asked said friend who they went with - Psymplicity Healthcare. One of the places that offered online consultations, and had some psychiatrists specialising in Adult ADHD on staff.
My initial assessment call cost me about £750, if I recall. And then my first prescription was £120 (two months supply of Concerta, plus pharmacy fees plus delivery). All in all I think I've spent just shy of £2,000 on it so far. So again, I am super privileged to be in that position... And also very greatful that I should soon be able to transfer to a Shared Care agreement with my GP, who will handle the repeat prescriptions side of thing via the NHS, and I will "only" be paying for the medication once a month. I should note here that I went with the Psymplicity recommendation because they were cheaper than the most well-known private psychiatry service with ADHD specialists, Psychiatry-UK.
(Damn, I must really want those Controlled and Addictive Substances for their Abuse Potential, eh...)
The cost, I totally feel, was worth it. It felt like an investment into my future self, and it really was. Because it was private, I could side-step the barriers I'd had before, or that I was anxious about:
No trying to book a GP appointment (mine is always fully booked at least 3 weeks out except for emergencies, the eConsult system the local practises use doesn't even acknowledge ADHD as an adult condition, assumes you're a parent who is seeking support for their child). Also aware that lots of GPs can be quite dismissive or skeptical; "ADHD is something you grow out of by the time you're an adult" or "Are you sure you're not just trying to score these addictive meds?" or "You're just procrastinating, do some CBT about it" or "Let's rule out absolutely everything else first" or "I ACTUALLY BELIEVE YOU, but the referral to the psychologist will take 6 months".
Instead, ring up, get appointment following week. Get sent some forms to fill in. One of which is an assessment of how you feel ADHD may be affecting your life now, in terms of lifestyle, relationships and work. Another assessment for how you believe it affected you as a child. Similar assessments for someone close to you to fill in - like, another character reference of you for the psychiatrist. And the same assessment again, but for your parent/parents to fill in.
I should note now, that Right To Choose is a thing now, and if you have a good GP you can probably get an NHS-funded assessment with Psychiatry-UK.
Was quite interesting going through the assessment with my family, as initially they were quite skeptical themselves, but when we stepped through it and talked about it - they started to remember stuff too and things seemed to be clicking.
There were a few duplicate forms, which irked me some - why did I have to provide my details via several painful IT systems? It seemed like the process of sorting out an ADHD assessment wasn't built for people with ADHD. Apparently that's really common though.
The psychiatrist appointment was over Skype, a 1 hour 30 minute call, in which the Dr basically repeated the assessments with me again, which made me feel a bit dejected at first, like, if they're just stepping through the same forms, are they actually a specialist? But as it went on, I could see how they were more prompts, and I had a chance to expand on my answers a lot, which you don't get when filling out the forms which were mostly scales of 1 to 5.
The psychiatrist was very friendly and affable, and appreciated some of the difficulties there are with assessing adults with the standard self-reporting scales, which ask you to rate yourself one to five on odd things like "I often find myself leaving my chair in meetings" - no, I'd love to pace around and fidget, but that stuff gets conditioned out of you as a kid!! You learn not to. A lot of the self-reporting stuff still seems based around assessing a young child, they've just changed some of the wording to suit adult situations. Anyone got any idea what the fuck Being Driven By A Motor is, though??
On top of that, as an adult Doc and I agreed I'm more of the Inattentive Subtype (ADHD-PI), though I reckon in primary school I was more the combined subtype. ADHD-PI is a subtler one to diagnose because the characteristics are more to do with focus and procrastination than they are more obvious impulsivity and hyperactivity.
At the end, they said they thought I was a mild case of ADHD, "Lots of my patients have been in prison for example!" But they thought I did have enough evidence of ADHD that I'd benefit from medication, and asked me what I'd like to try - out of the stimulants and non-stimulants, and instant release versus extended release. I didn't want to remember to take meds multiple times a day and it was suggested I try the stimulants first as they were shown to have efficacy with the most people, which is how I've been on methylphenidate ever since.
The "mild case" thing was disheartening, when I spoke to my friend about it they were wonderfully outspoken in my defense though - pointing out that psychiatrists pathologise everything and are always thinking in terms of risk, so the Doc didn't mean "You're just making it up" or "You're making too much of a big deal about nothing", more like "You're not a risk to yourself or others, so well done".
I felt frustrated at the time, because I was really hoping for a big fanfare, "Congratulations! You were Correct! ADHD is the Answer! This is your Identity now! Everything will Make Sense!" But it's a lot more subtle than that. Nonetheless, I had a diagnosis from a professional, and that satisfied my inner impostor syndrome goblin enough that I could start properly researching ADHD and incorporating all of that new-found knowledge and reflecting back on my past with fresh new perspective and start looking for more tools to help myself thrive - and crucially, how to ask other people for support.
And since then, in my follow-up appointments (of which I've had several, over Whatsapp video calls, 20 minutes, mostly just for prescriptions and to discuss dosages and switching medications, ~£200 a pop), Doc has been very supportive and not dismissive at all.
Still though... I can feel it. Despite objective tests, historical reports and medication that is having the expected effect on the neurology I am very certain now that I have, I still feel like a phoney. Like, it shouldn't have been so easy. Like, I cheated by going private - I've just bribed them.
And because I'm in my first year of learning about this all and reflecting on my experiences and having things click, I think I'm going to be sensitive to impostor syndrome for a while. Maybe it's something that's always there.
Then there's the begrudging thought that I can function just fine, just not in your regular 9 to 5 routine. I need more than 24 hours in a day and more than 7 days in a week. It does suck that I'm wilfully medicating myself to better fit in to a world that doesn't quite accommodate to whatever I am. In a way, there is some truth to ADHD IS A SOCIAL CONSTRUCT. I wouldn't go as far as saying we're just amazing creating hunter-gatherer superhumans being constrained by Society™ but... We do operate in ways that a lot of people don't really understand, because they function differently to us, and it takes a lot of work and energy on both sides to understand each other.
I have now hyper-focused on this for 3 hours and 16 minutes and 40 seconds -- pulled out of flow by my headphones running out of battery -- so I shall leave it there, otherwise I could keep adding to my thoughts.
This post may sound a bit despairing at times, but it's another tool I'm using to make sense of everything, making peace with myself, and getting stuff off my chest. What's left now is a feeling of excitement; what positive things can I communicate next time?