Neurodivergence is more than just a label
ON THE HUMANITY DESPERATELY WAITING TO BE HEARD.
Disclaimer: This is not medical advice, always chat to a medical professional in regards to diagnosis and/or medication use.
It took a long time. Not just to get the diagnosis, but to confront the parts of me that weren’t coping with seemingly small things that other people appeared to find easy.
29 years, minus a few.
It wasn’t until I was on the brink of having the things I wanted in some kind of relational balance, for the first time in my life: I was ready to face it. Something which had always felt like an impossible balancing act. The job, the relationship, the degree (almost, after 9 years of study). I was terrified of losing it all. By accident, or through boredom or burnout, or more than likely, all three in domino effect.
It wasn’t self-destruction, because I wasnt trying to fuck up everything up. But it was making it hard to love myself, sometimes.
I’d always had a bit of an inkling, and there was some family history there. I’d worked in the disability and neurodiversity space on and off for the last 5 years. But I hadn’t yet let myself fully go there – done my research, saved the money to get the appointments, and confronted that part of me. A therapist might have even said I was externalising it instead, maybe they were right.
I was on a waitlist for 6 months but in reality I waited for much longer than that. I was waiting to feel normal. Waiting to feel like a real adult (whatever that means). Waiting for the day where I got through 24 hours without feeling like I’d forgotten something important, fucked up, or accidentally tripped over, tripped up, dropped something, lost something, offended someone. What would it feel like to actually have honoured all my commitments in a day?
“Well, you’ve always had it”’, I remember the words echoing over me, not really landing. “Just go back and read through your school reports. See what you notice…Oh I’ll need them actually, to form part of the evidence I submit to the board.” Something, something, blah blah. “Can you bring them in next time?”, he said.
My stomach dropped at always. Always? Yeah, always. And when I got hold of my school reports it was all written on the wall, so to speak. The same words, which I felt like had infiltrated a part of my inner monologue because they had been spoken of me, so consistently in that pivotal time of growth at school.
If she only focused more. If she tried harder. If she only paid attention. If she better understood the task. If she was a better listener. If she only cared more deeply about A and less deeply about B. If she wasn’t late. If she was more organised. Then.. she would reach her potential. Then… we could give her the grade she deserves. Then… she would succeed. Then.
I’d grown wise enough to surround myself with diverse and quirky folk by now. Many of whom were neurodivergent or different in their own ways. They say we all find our way to each other eventually. So I didn’t hear these things spoken about me so often anymore. But in my head, they replayed like a Lizzo song – catchy, one liners on repeat. It was like a springboard of guilt and lined with shame, nestled between other idle thoughts that never had a beginning or end.
Even now, I write to you on a Sunday at 1am, my busy mind buzzing. The endless thinking wasn’t like anxiety, not always bad or negative. Sometimes positive, exciting, creative, interconnected webs of ideas or concepts. I did love the authenticity of my energy around projects, people, and ideas, that excited me. But too much of anything still gets exhausting, when the ‘off’ switch doesn’t seem to work. And even the most impassioned creative projects require a great deal of commitment, consistency and dedication, a feat which can be hard to pull off with an ADHD brain when the dopamine runs dry.
The grief that comes with diagnosis isn’t about being told you’re different, I’m pretty used to that. Neurodiversity is damn beautiful. It comes from realising how hard you were trying, for so long. Treading water. Upstream. Stuck in the mud. Just trying for the life of you to remember something important.
And how all those labels and assumptions and projections are not actually yours, but based on society’s constructed expectations. Structured very much around neurotypical brain wiring.
I felt a flood of sadness at things I’d lost: work opportunities, friendships, items of clothes I loved (a special salute to all the cool hats I have lost in various places over the years). Things I’d forgotten and couldn’t shake the feeling that I would never remember again. And things I’d forgotten and did remember, too late. Things like: special dates, birthdays, promises I meant, commitments to people I cared about, assignment due dates. Or things I’d probably never be good at, like reading maps or analogue clocks, time management, or sport. Coordination ain’t always a strong suit for us folks.
I felt like I was never doing anything quite right, whether it was driving, studying, sending an email or making toast. I felt like I was always one foot into the next thought, or to-do list. Then all of a sudden, the toast is burnt and there’s honey on your tit.
We detoured, but got back on track. So I remember being in the waiting room of the psychiatrist, an ADHD specialist. He only saw clients in this space. I went to the bathroom because I was nervous and drank nearly a litre of water sitting there. I was tuned into every conversation going on around me. A lady who was calling her GP about a new referral, a man talking to reception about some medication forms, the clock ticking, the TV playing some Dr. Phil story about a couple and their custody rights.
I needed to pee. I got lost but found the toilet, and there was nowhere to put my water bottle down, so I went to place it on top of a paper towel holder, knowing all the while, I would likely forget it and leave the water bottle there. Another casualty! As I went to put it down anyway, I noticed another water bottle, already there. Abandoned. And I burst out laughing. I thought: I’m with my people. I placed my bottle next to theirs, smiling as I did a wee. I’m not alone out here, I thought to myself. As I walked back in and the psychiatrist called me in.
I had remembered my water bottle, go me.
I sat on the couch of his small office and he looked at me, a mixture of pity and empathy, through his tiny turtle glasses, “So, let’s begin. Shall we?”
We got through a gruelling set of six different kinds of psychometric and written tests. He turned from his computer and calmly told me: Yes, you have ADHD, both kinds and you’re a bit on the spectrum. “But let’s just focus on the ADHD bit, yes?”
It didn’t feel like a weight had been lifted on or off, but that life made sense in a way that made me feel a wave of both anger and relief. It was validating and infuriating.
After more tests, this time an ECG on my heart, bloods, and a drug and alcohol screening. I returned to discuss medications and other options. Open to giving it a go, but nervous about losing my pazazz which the people who loved me had grown to find endearing.
But I had spent 9 years trying to finish a bachelor’s degree (in true ADHD style, also getting four other certifications along the way), I struggled with multiple hurdles to get to the finish line. I found the structure and framework of university so boring, and managed to get through with a combination of cramming, studying my special interest, and coffee. I later found out coffee is a common strategy for ADHDers to produce some of the chemicals they naturally lack to get things done. Ha! Gimme that dopamine and adrenaline, because god damn, I need it!
I was in a job I loved, I was so close to the end of my degree, I was in a beautiful queer relationship that I wanted to thrive in. So I thought, ‘“fuck it, medication is a tool right?”. I doubted it would help me, but tried to reframe it as an experiment that would either make life a bit easier, make me feel weird, or do nothing.
It makes life feel less like an endless to-do list and overwhelming onslaught of constant thinking and ideas, maybe it’s worth trying a new path forward?
The psychiatrist had explained to me some of the possible side effects when working out my correct dose, such as heart racing, tingling, nervousness. But on the first few days of the medication, I felt super calm and collected for the first few hours of the day, more capable of compartmentalising my thoughts, and then later became extremely sleepy around midday. I was on a slow release version of the medication, so this was strange. But the more I read, it made sense that the mind was now more quiet to receive signals like… sleep debt… and can be even a little bored by the quietness, so might interpret this as sleepiness. Slowly, I got the dose right and slowly, I adapted.
It wasn’t a perfect solution, and it didn’t make the world a rose coloured dream. But for the first time ever, I felt like I kind of had my shit together. So maybe, just for a little while, this is what I need – to live like the other half do. To build myself back up. To once and for all, crush the voices of not smart enough, not good enough, not organised enough, not trying hard enough.
I’ve always been trying. We have always been trying. But the world requires parts of us that don’t come naturally. I don’t just want to get by anymore, I want to show the world everything I’ve got.
A massive part of that is professionally having the capacity and energy to create more informed and safe spaces for people to not just succeed, but also to have community and opportunity around them, no matter how their brains work.
So for now, I’m using every tool in the box I can.
