As an adult, getting a diagnosis of ADHD can be like opening a door and discovering why aspects of your life have been so hard. By Russell Brown.
OPINION: My 60th birthday party was in magnificent swing when my mate Steve turned to me, grinned and asked when we were going to get our ADHD diagnoses. It turned out to be a trick question: he’d already booked his consultation.
Like Steve, I’d been talking casually about having attention deficit disorder, or being neurodivergent in some way, for years. Lately, we’ve found ourselves on-trend. An ADHD movie has just swept the Oscars. Daniel Kwan, the co-director of Everything Everywhere All at Once, has talked in interviews about modelling the film on the ADHD experience to the extent that he wound up being diagnosed himself and having the “beautiful, cathartic experience” of realising why things had been so hard.
Deep down, I actually liked the idea. In an interview about a decade ago, I trilled, “I suspect I’ve got an attention deficit disorder to some extent, which I don’t regard as a disability. It helps me process information quickly.”
I do apprehend and process information very quickly, if occasionally at the cost of accuracy, and doing five things at once was basically my brand for a long time. Yes, there had been that unfortunate time when I took an office job and lasted all of a day and a half, but that just cemented in the understanding that if I adapted, I could still be me. Nine years of presenting a TV show and relaxing when the red light went on worked pretty well.
In the end, I couldn’t keep up with myself. It wasn’t sustainable any more to constantly seek the stimulus of urgency, and I felt anxious and unhealthy. This sense of exhaustion is a not uncommon precursor to adult ADHD diagnoses. For Cleve Cameron, co-founder of the social enterprise Big Street Bikers, it was particularly acute.
“I’d been working in advertising and I collapsed,” he told me over the phone. “I literally lost my sight. I couldn’t work for three years. I had all kinds of tests for what was wrong and nothing came up until a specialist suggested that I was exhausted because I was undiagnosed ADHD.”
The medication he received was methylphenidate, branded as both Ritalin and Rubifen in New Zealand, and referred to below as Ritalin for simplicity’s sake. It let him resume his life.
In the past year, such public figures as MP Chlöe Swarbrick and spin-doctor Matthew Hooton have spoken publicly about their diagnoses, the latter in a much-discussed speech to Auckland Grammar School students in which he recalled having to get into “a frenzy” to write a one-page press release for his former boss, then National Party leader Todd Muller.
Swarbrick has talked about going through a crisis period of heavy drinking and anxiety before she entered politics, and Hooton is a recovering alcoholic. They weren’t simply looking for sedation. Alcohol stimulates the release in the brain of dopamine, a neurotransmitter sometimes called “the reward chemical”.
The orthodox medical view links ADHD to a shortage of dopamine in the brain. Dopamine is implicated in addictive behaviours, but is also linked to executive functions such as the ability to plan, organise and manage time. One of the reasons treating dependence on methamphetamine (which not only powerfully triggers release of dopamine in the brain but also blocks reuptake) is so difficult is that heavy users’ dopaminergic systems are bombed. The brain can recover from this neural damage over time, but until it does, they literally can’t focus and plan for a better life.
I’ve made some changes. I drink less and, for the first time in my life, I’ve got my head around using a digital diary more often. For decades, it had seemed normal to carry future appointments in my head, which inevitably resulted in me sometimes forgetting those appointments. Riding a bike, with the attendant risk of falling off or being hit by a car, puts me blessedly in the now and is the most reliable therapy I have.
A year ago, a mug of magic-mushroom tea left me with two insights: one was of the celestial genius of Alice Coltrane; the other – I sounded out the words in my head – was that “My head is really noisy a lot of the time. I should do something about that.” Afterwards, I deliberately didn’t do what I typically do reflexively: seek out the dopamine hit of a like, retweet or response on Twitter.
I still feel the benefit of that evening, but I still lose things the moment I put them down, I’m still restless and easily distracted and occasionally that escalates into a feeling of flapping anxiety. Moreover, I have sometimes used small doses of diverted Ritalin when I need to concentrate. For most people with ADHD, Ritalin, a stimulant, offers a paradoxical sense of calm. . It boosts the level of dopamine in the brain and offers the chance to focus and deal with things. Surely, at 60, I’m ready to be an adult and get a prescription.
Ritalin is not, however, a silver bullet and nor is the typical second-line medication, dexamphetamine. Last year, Guardian journalist Sophie Knight wrote a startling account of her struggles with the side effects of both prescription drugs, grimly concluding that staying on dexamphetamine, which allowed her to be productive, was a “deal with the Devil”. Some people find what Knight called the “singular piercing beam of attention” created by medication untenable and choose to stop.
It wasn’t until I prepared to write about it myself that I discovered something I didn’t know: in the past five years, several of my closest friends, the ones I think I’m a bit like, have quietly gone and been diagnosed. Clearly, we needed to talk.
Writhing inside
We convened on a Monday night. (Steve also turned up the previous Friday, but that’s how it goes.) Steve, 53, has worked in a long series of advertising and marketing roles since I’ve known him and is now in the software industry. Lisa, 58, was involved in the music industry, worked as an IT manager in ad agencies and now makes ceramics. Fred, 47, produces a large and complex annual event. Hilary, 58, recently qualified as a mediator in dispute resolution.
Most of our group of five have children with ADHD, autism or some form of neurodivergence. Hilary was the first to go there and her diagnosis still seems a jolt in some ways. We’ve known each other 40 years, and in that time she’s always been the one who stepped up and sorted things out for everyone else. She’s been a hospitality pioneer and a marriage and funeral celebrant. It turns out she was writhing inside the whole time.
“Masking!” she exclaims. “Women with ADHD are really great maskers. So I probably kept [the diagnosis] really quiet, because I didn’t want people to think, ‘Oh, you’re the one that presents as really highly functioning.’ When actually, behind the scenes, I was not and never had been.”
Hilary’s diagnosis five years ago followed that of her daughter: “I realised that I ticked every single box. I was going, ‘Oh my god, this is me.’ I was surprised, but not surprised. The diagnosis came through, ‘You’ve exhibited in your life experience’ … I’m at that point, what, 53? I suddenly felt this huge relief, and great sense of validation. No wonder it’s been hard. No wonder it’s hard for her to have this.”
For Hilary, there’s also an anger about what happened to her at school in an era when ADHD was rarely identified, and almost never in girls. Her parents, medical professionals, had high expectations, but in the fourth form she was streamed into the cruelly termed “dummies class” with other girls she says she knew were bright but different.
“And then you’re done. That’s how you were going be perceived at school, And it was terrible. It felt unjust. I went to an all-girls school, and without any support for students like me, it set us up for failure right from the beginning.”
Steve was diagnosed partly off the back of the school reports his parents had saved, and he recalls, “I’d ace the tests, but I was always getting kicked out of the class for talking and trying to get stimulation from something – it becomes self-fulfilling.”
Lisa’s reports routinely observed that she was “away with the fairies. Which I hated.” Fred recalls in his sixth-form year being so “kind and respectful and polite and engaged that none of my teachers actually noticed I hadn’t handed in a single assignment until it came to assessment at the end of the year”.
Fred was second to get a diagnosis, after Hilary disclosed hers to him in a moment he describes as “like a door had opened, or a pathway, because it’s something that I’d been wishing for. I had no idea that there was an adult diagnosis.” If his diagnosis was smooth enough, the medication took a little time to work.
“For the first couple years, I wasn’t taking it every day. Sometimes I’d take it and it was a bit intense and so maybe I wouldn’t take it the next day,” he says. “And then that day would be a write-off.”
With the help of a second psychiatrist, Fred settled on a slow-release formulation of Ritalin, which he takes every day, and an instant-release tablet, “if I need to put in an extra-long day”. He has also developed adaptations: several times a day, he’ll talk to Siri on his iPhone to remind him later about things he can’t deal with in the moment. He’s the boss in an office, but gets most of his serious work done before everyone else arrives and after they leave.
“I found the perfect job, really. I can think about 20 completely different things an hour and each one is critical to achieving what I need to achieve. So, I can just bounce around from something creative to staring at a spreadsheet for as long as I can bear it. And I must say, medication really improved that.
“But a really important difference is that I used to get very anxious. I think the anxiety is still there, but I’m not locked with anxiety. Sometimes, working from home – it mainly happens when I’m alone – I’d get so anxious that I’d just go to bed. I don’t get that sort of mental health exhaustion now.”
Lisa, who used to swap pictures of out-of-control laundry piles with Hilary, was next to be diagnosed. She says her daughter would get “furious” at her disorganisation and lack of focus. She takes Ritalin only when she does her ceramics work.
“When I don’t work, I don’t take it, just for a rest,” she says. “But I have found the medication so incredibly helpful. It’s shut out a whole lot of noise and a lot of anxiety. I’m a lot more focused on work, although I was really good at focusing when working in IT. I’d be quite happy to sit in a room with manuals and learn how to build servers or whatever. I could be incredibly hyper-focused on things that I loved, and then a complete wreck the rest of the time. I always say I’m going to die by tripping over a pile of washing.”
“I once came home and wondered who’d burgled my house, because it was such a mess,” Hilary interjects, “and then realised it was just my house.”
Diagnostic hurdles
Only specialists can prescribe the drugs for ADHD – and these experts are in short supply.
Perhaps the most common misconception about ADHD diagnoses is that only psychiatrists can perform them. Psychoanalysts, psychologists and neurologists can, too. But only psychiatrists and a handful of other specialists can sign the special authority that allows Ritalin or dexamphetamine – both controlled drugs with potential for abuse – to be prescribed.
Being the official pill-dispensers doesn’t sit easily with some psychiatrists. No only are there too few of them to meet the diagnostic demand, but, one psychiatrist told the Listener, they face strife and sometimes outright threats from patients and families who don’t get the diagnosis and prescription they want – typically because an anxiety disorder is diagnosed instead. “So we tend not to stick our heads up above the parapet.”
Auckland psychoanalyst Kyle MacDonald can’t prescribe without psychiatric approval, but says his clinic has seen “a marked increase in the last couple of years for people self-referring and asking the question. It doesn’t seem to be restricted to New Zealand. It seems to be an international Western phenomenon and no one really knows exactly why.”
MacDonald says there is good research indicating that physical activity can be helpful as a non-pharmaceutical therapy for ADHD.
“A lot of people find that doing physically active things is quite helpful and calming. Mindfulness is a bit of a buzzword, but it’s incredibly helpful for anxiety. It needs to be adapted slightly for people who have ADHD, to be active in some way, and that can be as simple as just walking. There are also meditation traditions that involve physical activity – the slow martial arts such as t’ai chi are very mindful practices, but they involve moving the body at the same time.”
But the problem with diagnostic capacity is real, he says.
“Part of the problem is we’re still dealing with the war on drugs. The whole reason these medications are scheduled is because they’re seen as being dangerous drugs of abuse. So actually doing something about the way in which we schedule medications and making them accessible for people is the obvious thing.
“The other bit is really just the same problem that we have with every other mental health issue in this country, which is there just aren’t enough trained people. Psychiatrists are the smallest group of any of the practitioners because they take anywhere from eight to 12 years to train.”
MacDonald praises Green MP Chlöe Swarbrick for working to improve the system. Ironically, it was her engagement with the issue that led to Swarbrick’s own diagnosis. She agreed to meet ADHD advocate Rory McCarthy to discuss a study he’d conducted about the experiences of adults with ADHD in the system and, McCarthy recalls, “another ADHD person and I talked to her about ADHD and said everyone was just struggling, the way we get medication sucks, there’s no aftercare support. And also about our experiences at school. Chlöe messaged me afterwards to say, hey, you were saying a lot of stuff that I could relate to quite a lot.”
McCarthy, who is not a medical practitioner but takes on clients as an ADHD consultant, says it’s no accident that one of the most popular ADHD self-help books is called You Mean I’m Not Lazy, Stupid or Crazy?
“If you don’t have a diagnosis, you get told that you’re lazy, that you don’t care, which is why so many of us end up as people-pleasers. We’re trying to do as much as we possibly can because we have this thought that unless we do everything, we’re not showing that we care.”
He says problems both before and after diagnosis can be particularly acute for women.
“Being followed up and talked to about side effects – for people who have periods, that is a huge issue. There are hormonal changes that happen every time that you have your period or in menopause and I have to talk to a number of my clients about that because it’s just not covered when they go and get diagnosed. They get given medication and then they start panicking because it stops working properly every so often.”
Like MacDonald, he believes meditation is helpful, along with any therapy “that gets you to be okay with the person that you are, rather than try to be something that is going to be impossible for you. If you don’t set an impossible standard for yourself and understand that you have strengths and limitations that you need to acknowledge, that makes it a lot easier to set yourself up for success.”
Definite mismatch
Steve, the most recently diagnosed, is the only one of the group to be prompted by the burgeoning catalogue of ADHD-related social-media content. “I did see things on Instagram or whatever and I was, like, ‘I’ve totally got this, I’ll go get it done.’”
He also had the best luck. A wait of six months for a diagnostic appointment is not unusual. Steve just went on a telehealth app, got a GP who was also a psychiatrist, “and two weeks later, it was all done”.
He can quell the urge to walk out of meetings now, and his new job provides constant stimulation, but he still alights on a key definition of disability: the mismatch between the environment and individual needs.
“I don’t know whether it’s a function of the way the world is set up or the way we’re set up, but there’s definitely a mismatch. It’s almost a moral failure to not be organised and pay your bloody phone bill on time. People take it very personally and are quite openly shitty about it. They think it’s fine to put you down. It kind of blew me away that people would have such well-managed lives and actually planned to do these things … you can do that?”
When I saw Steve’s partner several weeks before and asked how it was going, she happily confided that she’d come into the room and found him quietly reading a book. He’s also been meditating.
“It’s really, really hard and I haven’t done anywhere near enough of it,” he says. “But when I do, it’s awesome. I did the Vipassana [meditation] thing: 11 days, no talking. And every now and then, it would happen and it would be like, ‘Ah, okay, this is it, this is the most beautiful thing ever. It’s all inside me.’”
We all agree we are fortunate to have calm, accepting partners who love us for who we are. (“Everyone’s, like, what, he hasn’t divorced you yet?” laughs Lisa. “I’m always worried when he goes to the shop.”) Also, that we have our strengths. With the exception of Lisa, who professes to be hopeless at reading people or situations, we think we’re empathic, have a good hunch game, can rapidly assess a scene and are sensitive to what others need.
“I think that made me a very skilled hospitality operator,” says Hilary. “I could sense what was going on, I could predict and stop something happening before it happened. We are reading signals that other people might miss.”
Might this also make us charming to be with?
“I think so,” ventures Steve. “Because we’re all really good fun. Which I thought was normal, and it turns out it’s not. A lot of people are really pretty lame.”
These are, it must be said, the people I seek out at a party, which the interview is starting to become. Eventually, it’s time to disperse and I tidy up the bottles and bowls of snacks we’ve emptied.
A few days later, I start making inquiries. I don’t have health insurance (and some insurers don’t cover it, anyway), but I’ll find the money, about $1800, to go private, because I don’t want to spend two years waiting in the public system. Steve’s telepsychiatrist is booked until July, “and after that I will no longer be doing ADHD assessments, sorry”. She wishes me well. Fred’s psychiatrist can see me – in September. Any appointment will require a GP referral, and while I’m pondering that, a message arrives to say it’s time for my manual prostate check and that I should make an in-person appointment with my GP. A joke about freeing your mind and your ass following dances around in my head.
This will clearly take some organisation. The irony is not lost on me.
More information about ADHD, including a screening tool and guides to seeking diagnosis, can be found at the ADHD NZ website: adhd.org.nz. For more information on adult diagnosis, see Health, p38.
