In New Zealand, wait lists for private ADHD assessments can stretch for months or years at a time. Photo / 123RF
In New Zealand, wait lists for private ADHD assessments can stretch for months or years at a time. Photo / 123RF
ADHD is one of the most common mental conditions in the world, but tight restrictions on who can diagnose and treat it have left thousands of New Zealanders in the lurch. Felix Walton reports for The Spinoff.
I've got a brass band living in my brain.
That's what I would tell people before my diagnosis. An ensemble of horns, blaring the most sickeningly unpredictable free jazz arrangement. When words fail me, I turn to metaphor. I didn't have the language to describe what "my deal" was, but I do now. I have ADHD.
I survived school just fine. Thrived, even. It's why my parents never imagined that my brain could be different, and it's why I burned myself out. I understand now that I had been compensating, "masking" my symptoms by overworking my mind.
A close friend, who had been diagnosed himself just a few years earlier, shared his journey with me. I was shocked by how many of his experiences matched my own. For most of my life, I had seen peers breeze through tasks that, for me, could derail entire days. It was the first time I recognised that others were going through the same thing.
But when you're an adult, especially one with a deficit of attention, it's not easy to plan your next move. It would be months before I even asked for an assessment, and many months more for it to be scheduled.
When it finally happened, I was diagnosed in about half an hour.
In New Zealand, wait lists for private ADHD assessments can stretch for months or years at a time. If private care isn't an option, you're basically out of luck. In a hilarious twist of irony, the journey to understanding your inattentive mind is lined with hoops, hurdles and distractions.
Darrin Bull points out that people with ADHD are five times as likely to attempt suicide. Photo / File
Darrin Bull, chair of ADHD New Zealand, has two children with diagnoses, and oodles of friends who point to him as the genetic link. Though he hasn't been assessed himself, Bull is all too familiar with the process. "I consider myself very fortunate because I can afford to pay for their treatment privately," he says of his children.
Bull initially sought an assessment for his son through the public sector, but was met with a waitlist that stretched beyond the horizon. "When we went private there was a three-month wait," he says.
"Three years later we got a call from the DHB saying an appointment had opened up publicly
"I don't think he would've stayed in school if we had to wait those three years."
ADHD New Zealand maintains a database of psychiatrists who can perform assessments. "Right now, the entire South Island just has one," says Bull. "He's not the only person, but people ask us to remove them from the site because they're overbooked and have wait times lasting several years."
The role of diagnosis
My decision to get assessed was driven by a desire to find answers. I wanted to understand my brain in a way that had previously eluded me. Even faced by a comparatively tiny wait time, my violent impatience felt like torture. Subjecting someone to that uncertainty over multiple years is unthinkably cruel.
But that's the reality for many children and adults living with undiagnosed ADHD, trapped in the limbo of self-diagnosis. When the real world can't offer support, they turn to the internet.
"There's some amazing videos on TikTok about ADHD, and then people are diagnosing themselves through that," says Bull. "I was recently asked if I have a problem with self-diagnoses, and I said: well no, not if it takes two years to get an assessment.
"If it's your only option, what else are you going to do?"
It was through reading and listening to others' stories that I was able to identify my own ADHD. Although social media overflows with misinformation, it has also played a vital role in destigmatising the disorder and has revealed a surprisingly large population of under-served people.
ADHD New Zealand estimates that 280,000 people across the country have ADHD. Four out of every five, Bull says, are undiagnosed.
"There's very little support," he says. "And what is there is driven by good-hearted people, rather than a robust system."
During my search for treatment, it often felt like the healthcare system was actively hostile. That's by design. In 1998, the law was changed to make accessing Ritalin far harder.
"It was a moral panic about Ritalin," says Bull. "That it was being over-prescribed and that people were lying about ADHD to sell it." Stimulant medication like Ritalin has long been considered the most effective treatment for ADHD, and while some choose not to take it, it's proven to be vital for countless others in keeping up with daily life.
By turning Ritalin into a "specialist only" medication, anyone seeking treatment over the last two decades has struggled against a psychiatry sector that was, and remains, unprepared for that demand.
In 1998, the law was changed to make accessing Ritalin far harder. Photo / 123rf
"The media started to push this story, and very quickly the ability for someone to get diagnosed by a GP was removed," says Bull. "You read those articles, and what [then health minister Bill English] told the media, and your heart just sinks." That stigma continues to punish everyone with ADHD, whether they're seeking an assessment or renewing their prescription.
Many doubt it exists at all, especially among adults. "A few years later, I saw a cover story: ADHD or bad parenting?" says Bull.
It's easy to assign personal blame for what looks, from the outside, like bad behaviour.
That blame sticks with you. In the months leading up to my assessment, I doubted everything I thought I knew. I was a liar, a phony looking for an easy solution. I needed to try harder. I needed more discipline. It was never enough.
It's only recently that professionals have acknowledged that ADHD persists into adulthood, and the stigma is starting to erode. Auckland Central MP Chlöe Swarbrick has opened up about her late diagnosis, prompting a nationwide conversation about the disorder, and the large population that remains unsupported.
It also got people talking about what it means to have ADHD in the first place. Is Chlöe Swarbrick an incapable politician? Of course not. Am I an incapable journalist? Not because of my ADHD, at least.
Part of my journey has been recognising the ways in which ADHD makes me better. "It's a power that makes people approach problems in a different way," says Bull. "We need that in our world, we need creativity."
Damaris Coulter describes ADHD as a difference in "operating system." Photo / Doug Sherring
If there's one thing I've never doubted, it's my ability to problem solve. It makes sense. My brain is a puzzle that I'm always piecing together. I've gotten rather good at it. The benefit to thinking differently is finding solutions nobody else considers.
That ability, and the assumption that ADHD is inherently negative, is why I lasted so long without a diagnosis. It's also why some are questioning whether "disorder" is the right word to use.
"People like to fit us into these diagnoses," says Damaris Coulter, co-founder of Auckland restaurant Coco's Cantina, who was diagnosed four years ago. "They need to understand what you are, they don't have time for nuance."
She describes ADHD as a difference in "operating system." It's an apt metaphor. Much like iOS and Android: we can do the same stuff, we just get there a little differently.
Navigating those differences can be hard, but it's a worthwhile endeavour. "I think the diversity it brings makes the world a much better place," says Bull. But bridging that gap means undoing decades of misunderstandings.
"I don't bother explaining it to people," says Coulter. "I feel like you can never explain it to them, because they see you as a menace. They see you as difficult, contrary, agitating."
"They don't see you for what you are," she adds.
What I am hasn't changed, but the way I see myself has. Being able to categorise myself is deeply comforting, but that category doesn't define me.
Felix Walton describes ADHD as like having an ensemble of horns in your brain, blaring unpredictable free jazz. Image / 123rf
"I think everyone is on the same spectrum, it's just a matter of where they fall," says Coulter.
Most people fall a bit closer to normal. You know normal: it's when you're never late, when you sit through eight hours of work and meet every deadline. I'm definitely not one of those people, and you probably aren't either.
Those people don't exist. They're a standard we hold ourselves to but never really meet.
