Green Party MP Chlöe Swarbrick is determined to make meaningful health reforms happen to benefit those who have ADHD and autism. Photo/Babiche Martens
Chlöe Swarbrick, Green Party MP, Member of Parliament for Auckland Central, and Green Party Mental Health Spokesperson, was diagnosed with ADHD a year ago. In her own words she talks about her experience with the condition and how things are changing for the better.
I remember being really upset about something as a kid. Grandma consoled me, saying to think about life as a series of ups and downs, like a roller coaster. While this might be a low, she said, if you zoom out from the moment and consider the whole squiggly line of emotions and experience – including those you haven't had yet – you get a sense of how it's all part of the journey. The lows give the highs context. You don't get the happy without some sad.
At the end of 2020, after a phenomenal and emotionally draining year, I found myself unable to really feel either those highs or lows. There was some blocker somewhere, and with the encouragement of my ever-supportive partner, Nadine, we decided that it was probably time I made space to do some work on my brain.
We all experienced a lot of the same roller coaster that year. Covid-19 had reared its head and our country had our first taste of lockdowns – three of them, for those of us in Tāmaki Makaurau. An extraordinary and exhausting election was extended by another month. We mobilised close to 1000 volunteers to win the seat of Auckland Central, the first third party to win a general election seat without the implied backing of a major party in MMP's history.
Our community worked really hard to get to this place, with this political opportunity for change. We'd done something unprecedented, against all the naysayers. We were jubilant. But personally, I couldn't quite connect the emotional dots.
It had been a few years since I'd last seen a counsellor. I decided back then to stop going because I felt like I was wasting her time, sitting in the chair running what felt like a bit of a script. I joked to my friends, because I didn't know how else to explain it, that I was behaving like Tony Soprano, distant and full of bravado.
I started seeing my new therapist in February 2021. A week later, by coincidence, I was meeting with ADHD/Autism Coach & Independent Researcher Rory McCarthy, who had contacted me to discuss Adult ADHD and Autism in my capacity as the Green's Mental Health Spokesperson.
Rory traced through a presentation about the blurry lines between Attention Deficit Hyperactive Disorder and Autism, both "neuro-developmental" conditions. He pointed out that these things manifest differently in different people and that diagnosis was incredibly gendered. Young men bouncing off walls and disrupting class were most likely to get a diagnosis. Those of us socialised into the roles of women, with the expectation of people-pleasing, became far more accustomed to "masking" and went unrecognised in our struggle.
Masking is something that to a certain extent all of us learn to do as we grow up and become accustomed to social norms: how not to constantly embarrass ourselves and navigate the world. It's a process that has a huge emotional toll on those whose brains don't process things "regularly", constantly hunting out cues and recalibrating behaviour to make other people comfortable.
Rory outlined the statistics for people with ADHD and Autism and their far higher prevalence of substance abuse, educational failure, relationship breakdown, workplace difficulties, criminal justice system interactions and communication barriers.
He explained these types of brains could also have incredible gifts if recognised and supported. The problem was lack of mainstream understanding, expensive processes for official diagnosis (let alone treatment), entrenched stigma and real likelihood of misdiagnosis.
He explained that's why there seemed to be the emergence of a large community of people self-diagnosing and supporting each other on the internet, particularly on Twitter.
Later that evening, I sent Rory a message asking about those self-diagnosis tools.
He sent through a questionnaire. So many of what I had thought were my weird idiosyncrasies lined up in a uniform checklist.
I went back to my psychologist and told him that I thought this might be what was going on with me. He told me that he could support me with whatever came from the diagnosis and treatment, but to get that, I would need to go to my GP and get a referral to a psychiatrist.
At the same time, ADHD content was evolving from the community Twitter-sphere and starting to swamp social media platform TikTok. Symptoms were simplified and presented for consumption to mass audiences. The important conversation around prevalence was starting to be had, and in the absence of an accessible and affordable mental health system, more and more people were self-diagnosing.
I didn't think anyone would believe me. Undiagnosed ADHD was often attributed to failing to navigate the system. Somehow, I'd got elected into it.
I gathered as much evidence as I could and went to my GP. My heart sat in my throat as I answered her questions, feeling the way some of us do at police stops and airport security, despite all logic. She ended up referring me to a psychiatrist, which ended up being a several month waitlist, despite my privilege in being able to afford the private route.
A few months later, my new psychiatrist diagnosed me with ADHD.
Had my diagnosis come 10 years earlier, I might not have spent my late teens and early 20s wondering why I was such a conventionally bad friend and family member, always forgetting to text or call back. I might have found far earlier the habit that formed only because I couldn't afford a new laptop at Uni, to write absolutely everything down for reference, to be accountable to my commitments, lest I forget who I promised what.
Had I been diagnosed 20 years earlier, I might have saved an entire schooling of confusion, understood why I zoned out at all the important parts, why depression never quite explained the numbness. That I wasn't actually introverted; I love people. I just don't always know how to understand them.
As anyone who's been diagnosed will tell you, access to medication is a mental gymnasium designed for people with ADHD to fail.
Despite presenting in a number of different ways, for many of us one of the key shared experiences for those with ADHD is a lack of something called "executive function.' That's the ability to plan, focus attention and remember things - these can sometimes be overcome or lost in the wash with our other skillsets, like hyper-focus or jumping to urgency.
When failing to complete tasks that seem completely normal and easy to other people, we're usually met with a familiar sense of shame and guilt.
While this behaviour is key to diagnosis, policymakers have built a sometimes insurmountable process to access the very medication that would help assist that executive function in the first place.
Firstly, you have to get a psychiatrist to issue a "special authority". Then, you have to get your psychiatrist to issue the script or send information to your GP. You then have to contact them every time you need it renewed, which is every month, and you have to pick up your medication within seven days of the script being sent to the pharmacist. Every two years, you have to go back to that hundreds-of-dollars-a-half-hour psychiatrist to confirm that your ADHD has not evaporated and you do still need treatment.
To someone without ADHD a lot of this may sound like mundane and expensive but do-able admin. I still forget to collect my script semi-regularly.
What's mind-blowing is that this rigmarole is unique to ADHD medication. While we tend to think about the War on Drugs as the harm caused by pushing illicit substances, users and their consumption underground where it's more dangerous and criminally punitive, the other edge of the sword is the mindset that introduced excessive difficulty to access ADHD medication.
My baby sister (who now has two babies herself) was born in 1997. That same year, the Ministry of Health created new guidelines for diagnosis and treatment for ADHD. Then-Health Minister, Bill English responded to media panic and political pressure about ADHD prescription medication apparently washing our streets.
"Moral panic" is defined as a widespread feeling of fear based on "false or exaggerated perceptions or information that exceeds the actual threat society is facing".
This was exemplified in much reporting of the period, such as the 1997 Timaru Herald's uncritical run of Aoraki Labour MP Jim Sutton's argument, devoid of evidence: "I think that Ritalin and other brain-changing drugs for children are being recklessly used in South Canterbury."
Fast forward to 2022, ADHD NZ reports that there are no specialists available in the public system to diagnose or prescribe for adult ADHD in the entire South Island, recommending it is quicker and easier to fly to Sydney if you can afford it.
In February 1999's New Zealand Doctor magazine, GP Tony Hanne called the new regulations unwise. Dr Hanne stated, "It's enormously expensive for patients...who will be unhappy to be managed by a psychiatrist." ADHD NZ's late 2021 report illustrates that 80 per cent of the ADHD community struggle to get support, many giving up and those who can afford it going private.
Those changes made over 20 years ago remain relatively untouched and in place to this day.
The Ministry of Health estimates, based on global evidence, that one in 20 New Zealanders have ADHD. Written questions to the Minister of Health, though, show that we don't have a picture of how many New Zealanders have been diagnosed.
Some of this is put down to the inability of the different reporting systems of different DHBs to talk to each other, which will no longer be an excuse after the health reforms.
A year on from my diagnosis, I had the privilege of helping pull together a Parliamentary hui with ADHD NZ in late August of this year. Psychiatrists, psychologists, paediatricians, Ministry of Health, Pharmac and Te Whatu Ora were all in the room; everyone who needed to be to make system change.
With a visit from the Minister of Health too, we got a groundbreaking commitment to six transformative actions, including changes to the arduous "special authority" process that has for two decades stymied those with ADHD getting their medication.
I am lucky l had a support network that put up with all of my complexity, well before my diagnosis.
Every day, I have the privilege to work to try and change systems so we all have that support. At the very least, I can guarantee important, evidence-based change is coming to ADHD diagnosis and prescription for those who will come after me.
Let’s take a look at the science.