Australian Greens: ADHD: A difficult, hard path to diagnosis

Over recent years there’s been a swelling tide of ADHD diagnoses – thankfully because we’ve come quite far in our understanding of the condition, the people it affects and how it manifests in them. But there is still a long way to go, and the Greens are working to fix it.

By Joana Partyka

There’s a little anecdote you may have heard that goes something like this: someone left a cough drop on the dashboard of your car. You spot it and you tell yourself you’ll throw it away at your next stop. You make your stop and get back in the car; the cough drop is still there and you tell yourself you’ll throw it away when you get petrol. You get petrol and get back in the car; the cough drop is still there and you tell yourself you’ll throw it away when you get home. The next day you get in your car and the cough drop is still there.

That, in a nutshell, is my experience of attention deficit hyperactivity disorder, or ADHD.

If you find yourself relating, perhaps you’re among the roughly 2.5 percent of Australian adults who also have it. If you find yourself relating, perhaps even more likely is that you’re among the 9 in 10 of those who are not diagnosed nor receiving the support they need to optimally manage it.

That’s because navigating ADHD diagnosis and treatment in this country can be as frustrating and meandering as the cough drop story sounds. ADHD is fundamentally misunderstood, misdiagnosed and dismissed in both social and medical contexts. It is popularly and wrongly perceived as a behavioural disorder, a mental illness, a learning disability or just a bad attitude, and it is underplayed at the same time it is proclaimed to be overblown.

Square peg, round hole

If I ask what comes to mind when you think of ADHD, maybe you’d offer the same two words I once did: hyperactive schoolboy. It’s certainly a valid response; schoolboys deserve to have their hyperactivity taken seriously insofar as it being an expression of their ADHD. That it’s often the only response, even among healthcare practitioners, is where we have a problem.

When we examine the medical literature underpinning our understanding of the condition, we can see why. Clinical studies into ADHD have historically and almost exclusively focused on the exact hyperactive schoolboys we were just thinking about; decades upon decades of research limited to this slim demographic reinforces the consensus that ADHD is limited to this slim demographic. The result is a narrow set of diagnostic criteria against which we are all now measured, even though hyperactivity isn’t apparent across all three ADHD subtypes. Girls, women and non-binary folks, who tend to present with what is known as the inattentive subtype of ADHD, are chronically under- and misdiagnosed as a result.

Compounding this gender bias is the social conditioning to which girls are subject from an early age. We’re taught to be deferential and accommodating in a way boys aren’t; to stifle ourselves for the comfort of others. We learn to mask the behaviours that might make us unlikeable – particularly those considered masculine, like disruptiveness, interrupting and impulsivity – as quickly as we conform to the expectation that we are of the tidy, organised gender. We first internalise and then embody the message that a good girl is a quiet, conscientious one, and we play the part so well that our ADHD often goes entirely unnoticed, sometimes even by our own selves.

Course correction

While there are certainly signs of progress in our collective understanding of ADHD, the people it affects and how it manifests in them, it’s also true we need a great deal of further research and training to bring the medical profession up to speed. The first Australian ADHD clinical practice guideline released earlier this month goes some way toward addressing that; its clinical protocols for doctors and recommendations for government provide a useful blueprint for the way ADHD could be approached if it were regarded with the gravity it deserves.

On the flip side, when there are signs of progress in the medical field it can be the rest of us who need to catch up. In response to the swelling tide of ADHD diagnoses over recent years, we’ve seen widespread skepticism and derision – especially in response to outwardly successful women who couldn’t! possibly! have! it! It’s the condition du jour, detractors say; a 21st century malaise sought out by a TikTok generation naive to the venal tactics of Big Pharma. ADHD is a normal response to modern life! It’s being overblown! Overdiagnosed! Overmedicated!

In fact, we can find one of the earliest references to ADHD-like characteristics in the medical literature as far back as 1775. 1775. And prevalence isn’t increasing – diagnoses are. Which, of course they are, because as we know until very recently we limited the incidence of ADHD almost exclusively to that damn hyperactive schoolboy.

It is, as Guardian journalist Matilda Boseley recently tweeted, simply a case of course correction. It is, as someone who responded to Matilda’s tweet identified, not unlike the ‘increased prevalence’ of left-handers after they stopped forcing us to use our right hands because we were believed harbingers of evil and bad luck.

The recent rise in ADHD diagnoses can also be attributed to, well, *gestures broadly at everything*. While its neurodevelopmental genesis means ADHD is present from birth or shortly thereafter, we often manage to muddle through; to find ways to steady the scaffolding of our lives. Then, when a highly disruptive life event blows it all over, we have so much trouble rebuilding that it’s clear something else is at play. 

Case in point: the pandemic, which – as it has for so many recently coming into a surprise diagnosis deep into adulthood – shattered the coping mechanisms I subconsciously adopted over years. Having a baby, getting divorced, starting university: circumstances that force you to manoeuvre through new routines, new stressors and/or new surroundings can throw you into the deep end without any idea why you suddenly can’t swim.

It’s not just that things are a bit hard, because of course all of us find such events hard – it’s that there is such a level of dysfunction that it impairs the way you move through the world. ADHD can significantly impact everything from the way you engage with family and friends to your capacity to manage your job and your shopping list. Low self-esteem, depression, anxiety, relationship difficulties, job instability, self-harm, eating disorders and substance misuse are just some of the things that present significantly higher in people with ADHD. Broadly speaking, the later in life you receive help to manage the diagnosis, the higher the propensity toward these behaviours.

The big ‘oh’

Late last year in my work at Jordon’s office, I began some preliminary research into what it might look like to bring the diagnostic process for ADHD and autism for children and adults into Medicare.

In researching the conditions, I learnt about how ADHD shows up in adults, particularly in women, and how its roots wrap tightly around every part of a person’s life. How you have difficulty focusing, or conversely how you might intensely focus on something to the exclusion of everything else. How you’re disorganised and frequently swamped by clutter. How your working memory can be chronically sketchy – less memory, more work. How you zone out of conversations, even when people are speaking directly to you. How you put things off to the last minute or beyond, like paying bills even when they’re past due.

As I worked my way through this information, I frankly became a bit annoyed. It didn’t really explain what differentiated people with ADHD from everyone else. This is what we all experience every day; this is what I experience every day.

Until: oh.

Oh, that’s why my desk at work is always carpeted in a thousand loose post-its and used zip-lock bags from my Coles Scoop & Weigh snack habit. Oh, that’s why I habitually fail to pay my very affordable phone bill until Optus threatens to send out a debt collection agent. Oh, that’s why I have zero recollection of important information that was delivered to me verbally; why an entire day goes by in five seconds when I’m making pottery; why I can never remember the definition of ‘banana republic’ no seriously though what does it mean.

And while it also explains why I can never seem to keep on top of the most basic of ‘life admin’ tasks, I did manage to then make and keep a succession of appointments that led to a formal ADHD diagnosis.

Nice to meet you

There is great relief in receiving a diagnosis, and in the accompanying treatment that promises a relief of its own. The realisation that there is a whole community of people who experience the world the way you do – that they’ve been there the whole time, that they’re figured out a way to be that isn’t drenched in permanent shame, and that maybe you could get there, too – is genuinely life-changing.

But there is also a sense of being unmoored: against your will, you are forced to perform a sharp emotional u-turn in the way you understand yourself, the world, and your place within it. Suddenly, you must look at everything you thought you knew through a whole new lens – one that’s kind of the same but different enough to fundamentally change your entire outlook, like when you’re at the optometrist and they repeatedly ask of the many lenses with which they test your sight ‘which is clearer: A or B?’ and it’s hard to tell but you know there’s actually a significant distinction.

In short, your identity is blown wide open. That’s all at once liberating and terrifying.

Then follows the work of reframing a lifetime of perceived personal failings as the inborn characteristics of a neurodevelopmental disorder. The years of self-loathing over undesirable ‘personality traits’; the total inability to correct those behaviours despite repeated, whole-hearted efforts; the deeply held belief you are inherently not a good nor capable person – unlearning these things after 30-something years of what the blurry old lens presented as irrefutable proof of defectiveness is a challenge.

At her speech to the National Press Club in August, comedian and presenter Em Rusciano beautifully synopsised this experience in the sense of “enormous grief” a diagnosis can trigger. “It profoundly changed my core beliefs about myself; it ripped open scars I didn’t know I had,” she said. Rusciano also hit on the deep sadness for the you who tried so hard to be ‘normal’ without any idea why it always felt like a losing battle. Which parts of your life were more difficult than they should have been if only you’d been diagnosed back then? Would you have managed uni, jobs and relationships better? What opportunities did you lose out on? What kind of person would you be today?

Equally difficult to shake off as those questions is the fear that perhaps you don’t have ADHD at all; that somewhere along the way you somehow duped your psychiatrist and botched your neurological tests and you in fact remain neither a good nor capable person – who, on top of everything else, is now laying claim to an identity that isn’t yours to take.

Which leads us down yet another rabbithole, as things so often do when you have ADHD: disabled identity. ADHD is recognised as a disability under Commonwealth legislation, and there are growing calls to have it recognised by the NDIS as a primary disability. So am I disabled? Do I get to call myself disabled? Do I want to call myself disabled? Yet more questions you never expect to field come begging for answers, in hand with the hard realisation that there’s some internalised ableism to work through – a process that, as I have learnt from Jordon himself, does not necessarily have an end point. 

A long road

The space between recognising yourself in the laundry list of ADHD characteristics and being issued an official membership card can be cavernous. Getting a diagnosis is neither easy, fast nor cheap; making it happen calls upon the very executive function of which ADHD often strips you – a paradox not lost on anyone who’s going or been through it.

For me, the path from my clarion ‘oh’ to its clinical confirmation was mercifully and comparatively short, solely because I am fortunate and impatient enough to pay for it privately. And goodness have I paid for it: at least a couple of thousand dollars and counting. That is by no means exceptional. Even going through the public health system – that ‘free and universal’ one – will set a person back many hundreds of dollars, if you can even get an appointment in the first place.

On top of that are the waitlists that can range from months if you’re very lucky to longer than a year. Can confirm: if back in January I’d elected to go via the public system I’d literally still be waiting for my very first psychiatric appointment.

Part of the problem is that diagnostic privileges are currently limited solely to psychologists and psychiatrists, the latter of which alone can legally prescribe the stimulant medication often used to help people manage their ADHD. Many of these specialists don’t take on new patients, or don’t deal with ADHD or with adults, or don’t believe adult ADHD is a thing, or have a narrow and outdated view on what ADHD looks like in adults. To find this out firsthand you’ll first need a GP referral, and we know many GPs don’t take on new patients, or don’t believe adult ADHD is a thing, or have a narrow and outdated view on what ADHD looks like in adults.

This medical crapshoot – and the resultant and needless suffering of so many people – is exactly why our office is investigating how we can improve access to and quality of ADHD diagnosis and care in this country. It’s why I started this research to begin with, and why I very unexpectedly found myself with a personal stake in this initiative.

To help inform the next steps of the campaign, we’re conducting an ADHD survey throughout October, which is ADHD Awareness Month. The intention behind the survey is to help us form a better picture of the ADHD community’s experiences in the healthcare system, where the barriers and gaps are, and how we can ultimately improve access to diagnosis and support.

Excitingly, the survey has already attracted responses from more than 10,000 people. If you’re not one of them and you have ADHD, we’d love to hear from you about your experiences – the survey is open until October 31. If you are, thank you for the time and effort you put into your response. And keep an eye out for the next phase of the campaign: we’re holding an ADHD community forum next month, where we’ll be reporting back some key findings from the survey.

***

The cough drop anecdote is a real story, told by a patient to ADHD specialist Dr Ned Hallowell, who recounts it in his book Driven to Distraction. The story ends with the person bursting into tears when they get back in the car the next day to see the damn cough drop still there on the dashboard. “My whole life is like that,” they say. “I see something that I mean to do and then I don’t do it.”

If you find yourself relating, perhaps you feel like a failure. If you find yourself relating, perhaps even more likely is that you’re amazing, you’re doing your best, and it’s in fact the system that is failing you.

Senator Jordon Steele-John’s ADHD survey is open for responses until October 31 here.

Joana Partyka is a communications assistant in the office of Senator Jordon Steele-John and the Australian Greens’ national communications officer.

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