This is a deeply personal post. Feel free to skip this if you’re only here for the Linux and open-source content. It’s also a touch rambling. As for the title, no, I didn’t “get” ADHD on my birthday; obviously, that’s humourous literary hyperbole. Read on.
LET age = age + 1
Like a few billion others, I managed to cling to this precious rock we call home and complete a 52nd orbit of our nearest star. What an achievement!
It’s wild for me to think it’s been that long since I innocently emerged into early 1970s Southern Britain. Back then, the UK wasn’t a member of the European Common Market and was led by a Conservative government that would go on to lose the next election.
Over in the USA, 1972 saw the beginning of the downfall of a Republican President during the Watergate Scandal.
How times change. /s
Back then Harry Nilsson - Without You topped the UK music chart, while in Australia Don McLean - American Pie occupied the number one spot. Across the pond, America - A Horse With No Name was at the top of the US Billboard Hot 100, while upstairs in Canada, they enjoyed Anne Murray - Cotton Jenny it seems. All four are great performances in their own right.
Meanwhile, on the day I was born, Germany’s chart was led by Die Windows—How Do You Do?, which is also a song.
WHILE age <= 18
I grew up in the relatively prosperous South of England with two older siblings, parents who would eventually split, and a cat, then a dog. Life was fine, as there was food on the table, a roof over our heads, and we were all somewhat educated.
In my teenage years, I didn’t particularly enjoy school life. I mean, I enjoyed the parts where I hung out with friends and talked for hours about computers, games, and whatever else teenagers talk about. However, the actual education and part-time bullying by other pupils degraded the experience somewhat.
I didn’t excel in the British education system but scraped by. Indeed, I got a higher GCSE grade for French than English, my mother tongue. L’embarras!
My parents wanted me to go on to study A-Levels at Sixth-Form College, then on to University. I pushed back hard and unpleasantly, having not enjoyed or flourished in the UK state academic system. After many arguments, I entered the local Technical College to study for a BTEC National Diploma in Computer Studies.
This was a turning point for me. Learning to program in the late 1980s in 6502 assembler on a BBC Micro, dBase III on an IBM XT, and weirdly, COBOL on a Prime Minicomputer set me up for a career in computing.
IF income = 0 THEN GO SUB job
Over the intervening thirty years, I’ve had a dozen or so memorable jobs. Some have lasted years, others are just short contracts, taking mere months. Most have been incredibly enjoyable alongside excellent people in wonderful places. Others, less so. Pretty typical, I imagine.
During that time, it’s been clear in my head that I’m a nerd, a geek, or an enthusiast who can get deep into a subject for hours if desired. I’ve also had periods of tremendous difficulty with focus, having what feels like an endless task list, where I’d rapidly context switch and never complete anything.
The worst part is that for all that time, I thought this was just ‘me’ and these were “un-fixable” flaws in my character. Thinking back, I clearly didn’t do enough self-reflection over those thirty years.
BRIGHT 1; FLASH 1
The most mentally and emotionally challenging period of my life has been the last four years.
I consider myself a relatively empathetic and accommodating person. I have worked with, managed, and reported to non-neurotypical people in the tech space, so I had some experience.
In recent times, I have become significantly more aware and empathetic of the mental health and neurodiversity challenges others face. The onset of dementia in one family member, late diagnosis of bipolar & hypomania in another, and depression & self-harm in others, all in the space of a year, was a lot to take on and support.
After all that, something started to reveal itself more clearly.
INPUT thoughts
In my ~50 years, nobody has ever asked me, “Do you think you might be on the autistic spectrum?”. Is that something respectful strangers or loving family ask? Perhaps not.
A few years ago, at a family event, I said aloud, “You know, I feel I might be a bit ‘on the spectrum,’” which was immediately dismissed by a close family member who’d known me my entire life. “Oh”, I thought and pushed that idea to the back of my mind.
Then, in 2022, after the recent family trauma, the thoughts came back, but not enough to prompt me to get a diagnosis. I did attempt to get help through therapy and coaching. While this helped, it wasn’t enough, although it did help to nudge me in the right direction.
In 2023, I took a simple online test for ADHD & Autistic Spectrum Condition, which suggested I had some traits. I’m no expert, and I don’t believe all online medical surveys, so I made an appointment with my GP. That was exactly one year ago.
Note: I live in the UK, where the National Health Service is chronically underfunded and undervalued. The people who work for the NHS do their best, and I greatly value the services they provide.
GOTO doctor
I’m grateful to have known my Doctor for over 20 years. He’s been a thoughtful, accessible rock for our family through many medical issues. So when I arrived at my appointment and detailed the various reasons why I think I may have some kind of ADHD, it was a great comfort to hear him say, “Yes, it certainly sounds like it, given I have ADHD and do many of the same things.”
Not a diagnosis, but on that day I felt a weight had been ever so slightly lifted. I appreciate that some may feel labels aren’t necessary, but we can just get by without having to be put in little boxes. That’s fine, but I disagree. I needed this, but I didn’t know that until I heard it.
Imagine being at the bottom of a well your entire life and thinking that was how it was for everyone. Then, one day, someone lowered a bucket, and you looked up. That was how it felt for me.
Due to the interesting way healthcare works in the UK, under the NHS, and without a private healthcare plan, I was offered a number of options:
- Do nothing. I seemingly made it to ~50 years old without a diagnosis. Maybe I don’t need to do anything more about this.
- Pay ~£2K for an immediate private diagnosis appointment.
- Go on the NHS waiting list for anything up to three years for an initial appointment with a specialist.
- Get an NHS referral to a 3rd party partner healthcare provider. So-called “Right to choose”
- Self-refer to a private provider on a waiting list.
I figured that while yes, I have successfully attained over 50 solar orbits, I would like some closure on the issue. It wasn’t urgent enough to pay Apple-Laptop-levels of private costs, but more urgent than “After both the next Summer and Winter Olympic games”.
I suffered quite significant anxiety over the months leading up to and after this appointment. I felt I knew inside that there was something amiss. I knew whatever it was, it was adversely affecting many parts of my life, including work. I was somewhat keen to get this resolved as soon as I could.
So, I opted for both (4) and (5) to see which one would respond first and take that option. In the end, the private provider came back with availability first - six months later, so I opted for that at my own cost. The NHS partner provider came back to me almost a year after my initial GP appointment.
PAUSE 0
The appointment came through in late December 2023. I was asked a significant number of questions during the local in-person session. We discussed a range of topics from my early school memories, to work experience in between, and right up to the present day. It took a fair while, and felt very comprehensive. More so than a 10-question online form.
At the end of the meeting, I was given the diagnosis.
Moderate-Severe Adult ADHD - combined type ICD10 Code F90.0
ASC Traits ?likely ASC.
Essentially, I have ADHD and probably lie somewhere on the Autistic Spectrum.
It’s possible that anyone who has known me for any length of time, either in “meatspace” or online, may well be saying, “Duh! Of course, you are.”
Sure, it may well be obvious to anyone looking down into a well that there’s someone at the bottom, but that perspective wasn’t obvious to me.
PRINT “Phew!”
This got me out of the well, but the journey wasn’t over. Nothing has inherently been solved per se by having the diagnosis, but it helps me to put some of the pieces of my life in order and understand them better.
The whole process got me thinking a lot more deeply about certain stages and experiences in my life. Since the diagnosis, I have had a significant number of “Oh, that explains that!” moments both for current behaviours and many past ones.
READ choices
At the appointment, I was presented with further choices regarding what to do next. Do I seek medication or cognitive behavioural therapy, or again, do nothing. Some people choose medication, others do not. It’s a very personal decision. Each to their own. I chose the medication route for now, but that may change based on my personal experience.
I was offered two options, Atomoxetine or Lisdexamfetamine. Check the (Wikipedia) links for details and the list of common side effects. I won’t go into that here.
I opted for Lisdexamfetamine which I’m prescribed to take each day that I “need” it. Typically, that means I only tend to take it on work days, not at weekends or during holidays. However, some people take it every day. Some take it in the morning only. While others also take some in the afternoon, once the morning dosage has “worn off”.
Unfortunately, it’s not just a case of “pop the pill and all is sorted”, obviously. Getting the dosage right has been quite a challenge. As I’m under a private consultant, and the medicine is a “Class B Controlled Drug” in the UK, I am only allowed 30-days prescription at a time.
That means I have to contact the prescribing Consultant Psychiatrist regularly to get a repeat prescription through the post. It can also be tricky finding a pharmacy that has the medicine in stock.
On one occasion I was given half the amount prescribed, along with an IOU for the remainder, to collect at a later date. On another, the pharmacy had none in stock, but ordered it for next day delivery. I heard similar horror stories from others, but consider myself lucky so far.
Further, as I’m under a private consultation, I am paying between £70 and £110 per month for the amount I’m prescribed. Once the dosage is stabilised, in theory, the prescription will instead be issued by my NHS General Practitioner, and the price to me should drop to a more palatable £9.65.
RESTORE 52
The reason I published this article on this day, my birthday (with that title) is because I think we’ve finally reached the right dosage. I am finding myself able to focus and concentrate better, I’m less “scatterbrained” in the mornings, and feel less likely to forget, misplace and “drop” things.
The last four years have been crap. They’re getting better. Starting now.
CONTINUE
This was a rather personal account of the continuing journey of me, popey. Other people make different choices, have alternate outcomes, and may not feel comfortable explaining as I have.
Equally you may find it odd that someone would write all this down, in public. It may well be. It helped me to write it, and it might help someone else to read it. If that’s not you, that’s okay too.
Finally, if you’re dealing with similar neuro-divergency traits, and are experiencing it differently from me, that’s also fine. We’re all a bit different. That’s a good thing.
STOP
Yes, I used Sinclair Spectrum (get it? - ED) commands as headings. Sorry.