Wellington Mayor Tory Whanau has revealed an ADHD diagnosis with ‘significant traits of autism.’ In this NZ Listener story from September 2023, writer Russell Brown shares the life-changing impact of his later-in-life diagnosis.

When the editor of the Listener asked if I could write a feature about adult ADHD diagnoses, I jumped at the offer, not least because I had suspected for some time that I met the criteria for ADHD. I had a personal interest. What I hadn’t anticipated was the scale of the response from other people when the feature was published in April.

“Fantastic article, thank you for helping destigmatise, normalise, educate,” wrote one X (formerly Twitter) correspondent. “So fucking liberating. A late-in-life ADHDer.”

“Thank you for doing this Russell,” said another. “It’s brilliant there’s increasing awareness of ADHD. I wish people understood how challenging it can make life.”

There was another wave when the story was published on this website and the headline stayed on the home page for 3 solid days. Matthew Hooton, whose words about ADHD had resonated with me when I was writing it, emailed to thank me for a “first class” story on the topic. A journalist and a writer whose names you’d very probably know quietly messaged me to share their experience with diagnosis. Two other friends asked if they could talk to me about getting a diagnosis.

In other words, there’s a reality underlying the current media zeitgeist about neurodiversity and I got a pretty good look at it.

What most of the undiagnosed people were fretting about was simply getting an appointment, especially in Auckland. Yeah, me too. Not long after the story was first published, I asked my GP for a referral. The clinic he referred me to sent me registration forms and a Diagnostic Interview for ADHD in Adults (DIVA) self-assessment questionnaire, which I completed and returned immediately. The next time I heard from them was 4 months later, in an email bearing more forms and the promise of “process improvements”. Of the 4 others I contacted, 1 could offer an appointment in November and 1 in December – which felt a long way off at the time – and 2 said they were no longer doing assessments, but wished me well.

Then I got lucky. I came across a psychiatrist who had returned from a sabbatical and thus wasn’t booked for months ahead. Moreover, I knew someone working out of the same clinic who warmly vouched for my guy. I was underway, ready to tell the story I’d outlined in the pages of the Listener.

“What are we going to do about the fact that I already use methylphenidate [Ritalin]?” I said. Photo / Getty Images

Reader, I over prepared.

I sent a copy of the assessment I’d filled in for the first clinic – in which I ticked more than half the boxes – but it turned out that my psychiatrist wasn’t a fan of self-assessments and was more interested in family and educational history.

I talked about my father, an intelligent and conscientious man who died an alcoholic, having, I felt, never realised his full potential. I talked about my 2 autistic kids, one of whom I think would also meet an ADHD diagnosis. I didn’t really have a story about school to tell, apart from noting that I would generally do well in exams without having to prepare much, because the the major exams had a multiple-choice option back then. I had been bright enough to get away with a lot.

After about 45 minutes the psychiatrist looked at me and said, “I’m not sure I can give you a diagnosis.” From what I’d told him, my father and my younger son might have reached the threshold for an ADHD diagnosis, but I was too ... together. I was shocked.

“What are we going to do about the fact that I already use methylphenidate [Ritalin]?” I said.

“You didn’t tell me that,” he said, startled. “Are you on methylphenidate now?”

Well, yes, I was. And in the midst of my determination to be thoroughly honest about everything, I’d forgotten to say so. A friend who had stopped taking his when he was diagnosed with an unrelated illness had given me his remaining stock, which I’d been eking out to the tune of 2.5mg – a quarter of a tablet of Rubifen – every morning before work. It had been helping.

So we talked some more.

“I was firing all those questions at you and you were answering them calmly,” he pointed out.

“Well,” I said. “Two weeks ago I was interviewed by Kim Hill for 40 minutes on live radio. Talking to you wasn’t that hard.”

Ah yes, the Kim Hill interview. People loved it. I found it enjoyable and also nerve wracking. Kim always asks good questions, but they are not always easy questions to answer – and a lot of them were about neurodiversity, because my Listener story had been published the week before. I felt a little uncomfortable being called on as the voice of ADHD when I didn’t actually even have a diagnosis, but it was an important opportunity to talk about it to a large audience.

The assessment concluded with the psychiatrist writing me a prescription for a month at a small dose – still 4 times what I’d been taking – and making another appointment. “Next time, can I ask you to not take the medication beforehand.”

As I drove home, I thought, “You can’t ask me to be a mess. I’ve worked really hard on not being a mess, because I carry a heavy burden and I can’t afford to be.” It wasn’t until I got back and looked at the prescription (and the special authority allowing it to be filled, which can only be signed by a psychiatrist) that the relief washed over me. I had been believed, I was legit. I filled my prescription and bought a pill-cutter. At the psychiatrist’s suggestion, I subsequently upped my daily dose to half a tablet, or 5mg.

Three weeks later, my mother died. It had been a difficult year, with Mum increasingly needy and unwell and me increasingly overwhelmed by being the only immediate family carer. There were traumatic events in the week of her death from which I’m still unwinding. I wouldn’t wish it on anyone and I do think the medication helped calm what would have been a roaring in my head.

Anke Richter, the author of the excellent book Cult Trip and co-founder of Fight Against Conspiracy Theories Aotearoa (I do think we fact-checking types are over-represented in the ADHD ranks) wasn’t having such a good time with methylphenidate. We had compared notes earlier this year when I moderated a discussion panel she was part of at Splore, and neither of us had our diagnoses. But after months of taking methylphenidate, she told me, “I don’t think it’s having the desired effect.” She was hyper when she took the medication, and annoyed with herself for talking over people in conversations.

I’ve heard this story a few times now. Medsafe says the “usual dose” for adults is 20 to 30mg daily: I can’t imagine myself doing well on that. I look at my still relatively tiny dose (5mg, or 7.5mg if the afternoon’s falling apart) and I wonder whether some psychiatrists – who, after all, don’t have to take the drug – are defaulting to too high a dose for some newly diagnosed people, who end up, as one woman put it to me “chewing the inside of their cheeks”.

I had other reasons for wanting to keep my dose as low as possible – most notably, my blood pressure, for which I’m also medicated. Happily, that seems pretty good so far.

I should emphasise that I am not advocating self-medication, but it did happen and it’s not entirely uncommon. People with ADHD are more likely to “medicate” with alcohol and cannabis too, although the evidence indicates that problematic use declines when the standard medication – itself strictly regulated because of the fear of abuse – is prescribed. But I do wonder whether my clandestine therapeutic use of methylphenidate and – let’s be honest – occasional recreational use in the past gave me a head start on understanding what a dose was, at least for me.

It can be a risky thing to talk to a clinician about. I’ve come across several stories of people being denied a prescription if they did. One guy in a local ADHD Facebook group reported being refused because he said he used cannabis.

“Quite often people will have to lie to their doctor about previous illicit use in order to get a prescription,” said Rory McCarthy, the ADHD coach I quoted in the Listener story when I touched base with him on BlueSky. “The available evidence I have seen on this indicates that when medicated properly, substance use subsides.”

Clinical practices vary widely, he said, and some start on higher doses or titrate more aggressively than others. He believes a weight of evidence that another stimulant, dexamphetamine, is a better first choice than methyphenidate tends to be ignored here (“Speaking personally, methylphenidate was awful for me, but it took a long time to convince doctors to change me”) and, he said, “My other issue with meds is that due to the over-medicalisation of ADHD, a lot of people seem to think it’s THE solution, as opposed to being part of the solution, and the standard practice after diagnosis is generally, give people meds and let them figure the rest out themselves.”

Only specialists can prescribe the drugs for ADHD – and these experts are in short supply. Illustration / Anthony Ellison

McCarthy’s advice is to embrace your difference and look to things that make being yourself easier – which may mean not trying to do work you’re not suited to. Anke told me she would try dexamphetamine, but suspected that for herself, ADHD care would consist of “just better life hacks and morning swims in the ocean and doing less and going to yoga more – things like that. Lifestyle changes, and not relying on medication, because clearly methyphenidate isn’t the magic bullet for me.”

She has since changed brands twice after being told it can make a difference because of how the body metabolises it. She is now on the lowest dose of the longest/slowest release pill (Concerta) but is still unsure if it helps: “I have no reference point how I should be feeling.”

I feel fortunate, then, that methylphenidate levels out my day and helps me focus for longer periods on work, although it’s rare that I’ll take more than a quarter of a tablet at a time. I’ve occasionally been aware of what’s called a “rebound” effect, when the dose wears off after 3 or 4 hours and ADHD symptoms – scattered, distracted, more likely to pick a fight on social media – come galloping in.

I’ve seen the psychiatrist twice since that first visit and he wants to see me once more before handing me over to my GP. He’s recognised that I’m capable of working out my own dosage and, to be honest, I’ve quite enjoyed talking about... myself.

“You’re very introspective,” he told me last time. It’s potentially true, if not something I’ve heard about myself before. But part of the process has been thinking about how I respond to things. I am, as my ADHD friend Hilary puts, an “active relaxer” and I’ve realised that one thing I’d let slip out of my life was simply doing an activity I enjoy (in my case, cooking) without watching the clock. I seem to find it easier to settle down and read whole books now.

I contacted the well-known journalist and the well-known writer to see if they’d like to out themselves for this piece, but both cried off for the same, amusing, reason: “I haven’t told my mum yet!”

It’s probably for the best. If your ADHD falls below the level of a disability – and mine certainly does – what you’re getting with a diagnosis is a better personal model for how your brain works. It’s really not all bad – most of the ADHD people I know have admirable qualities that clearly derive from how they’re wired, the journalist and the writer included. You play to your strengths and make the necessary adaptations as you’re able. But it’s not necessarily everyone else’s business.

I do worry about people whose neurodiversity leads them to actions that see them before the courts and in prison. One of my jobs brings me into contact with those men and I can’t help but think we have let them down badly. I think about the guy in his 40s who impulsively went off his medication at the age of 16 and was never able to get a prescription again, because he was marked down as a “drug seeker”. I think about the ones who never got a diagnosis at all.

Perhaps, in the end, it comes down to the thing I learned from my two autistic sons about how we’re all different. Don’t confuse that with the flip, meaningless phrase that “we’re all on the spectrum”, because we aren’t. What it does mean is that your response to something might be very different to mine, because you’re experiencing the world very differently to me. Because our brains are different.

That insight from my sons has been a personal and professional gift. And in understanding ourselves and others, perhaps a little introspection is no bad thing.