When Zoë Rose found out she had attention-deficit/hyperactivity disorder – also known as ADHD – four years ago, at the age of 38, it was like the moment at the end of the Bruce Willis film The Sixth Sense when (spoiler alert!) it’s revealed that the main character was dead the whole time.
“Same scenario, but you had ADHD the whole time,” Rose says. “You’ve got to relook at your entire life”.
ADHD gave her a new lens through which to understand so many things about herself: why she wasn’t able to keep her house tidy, her misunderstanding of nuanced social cues, her “very, very, very big emotions”, her ability to hyper-focus on the very macro or very micro details but not on everything in between, her inability to tune out background noise.
It wasn’t that Rose hadn’t considered the possibility of ADHD before that point; a work colleague had suggested it many years before, and she was coming across increasing amounts of information about ADHD that made sense to her. But she was an adult woman with a great job, a stable marriage, and was successfully parenting a child. She didn’t feel at all like the stereotype of the 10-year-old boy who can’t sit still in class.
But then her partner fell ill, and Rose had to take responsibility for much more of the mundane, day-to-day tasks of life, such as renewing the car registration and paying the bills.
“Looking at the paperwork and all this stuff that he does, I just couldn’t get my head around a single bit of it,” she recalls. The wheels well and truly came off the bus. “If the criteria for the having or not having [ADHD] is if it’s messing up your life, well, OK, looks like I have crossed that threshold.”
But Rose pushes back against the idea of ADHD as a deficit. “I had ADHD when things were going well too,” she says. “I’ve always had ADHD.”
ADHD occupies a strange place in the pantheon of psychiatric conditions. It’s one of the most well-researched conditions, says clinical psychologist Ass Prof Emma Sciberras, an expert on ADHD at the Centre for Social and Early Emotional Development at Deakin University. But it’s also one of the most stigmatised and misunderstood.
“There’s increasing recognition that ADHD isn’t just boys that are naughty,” Sciberras says. “People are understanding that ADHD is actually a neurodevelopmental condition – what that means is that it’s something that continues over time.” While the condition by definition presents in early childhood – before 12 years of age – it is with someone for life.
That awareness has reached the general community, and has led to a number of high-profile people such as Em Rusicano and Mia Freedman revealing their journey of being diagnosed with ADHD as adults. Some commentators have questioned whether the condition may be becoming overdiagnosed or even “trendy” thanks to exposure on social media.
But if anything, ADHD in Australia is underdiagnosed, particularly among women, Sciberras says. “We are seeing increases in diagnoses, but … in Australia there’s little evidence of a diagnosis rate above and beyond what you’d expect is the community prevalence of ADHD,” she says. The current sense of increasing diagnoses, in adult women in particular, might simply be a matter of catching up.
Getting reliable data on ADHD diagnoses in Australia is challenging. It is estimated that about one in 20 Australians have the disorder, and a 2019 report suggested that far more men than women were being diagnosed across the lifespan. However, cognitive neuroscientist Prof Mark Bellgrove, from the Turner Institute for Brain and Mental Health at Monash University, says that could reflect underdiagnosis in women – particularly during childhood and adolescence – rather than a genuine gender difference in presentation. “In childhood, there’s a gender disparity favouring more boys diagnosed than girls, whereas in adulthood, that doesn’t appear to be the case,” he says. “I think it’s more likely that girls are undetected in childhood because their presentation is different.”
Recognition of ADHD both in childhood and adulthood is likely to rise further with the release this week of the first evidence-based guidelines on the screening, diagnosis and management of ADHD across the lifespan.
The clinical guidelines, developed by the Australian ADHD Professionals Association (AADPA) and endorsed by Australia’s National Health and Medical Research Council, provide evidence-based recommendations on screening people for ADHD, diagnosis, and the best treatment and support, both pharmacological and non-pharmacological. According to Bellgrove, who is president of the AADPA, they are a significant step towards improving outcomes for people with ADHD.
“It’s really important that for a condition that affects around a million people in Australia we have a unified bible with respect to diagnosis, treatment and support for folks with ADHD,” Bellgrove says. “It’s also hugely symbolic, for people living with ADHD in Australia, that the NHMRC has now approved the guidelines; effectively, it recognises their lived experience.”
The challenge with ADHD diagnosis has always been that many people would likely tick at least a few symptom boxes – such as regularly losing or misplacing important things, short attention span, inability to finish tasks, restlessness that is difficult to control, impulsive behaviour, being overly talkative, easily side-tracked.
But Bellgrove says for ADHD to be diagnosed, those symptoms have to be responsible for persistent, longstanding impairment. “It is about the adult reporting that they’re not coping with the symptoms of their ADHD in multiple aspects of their daily life”, such as education, job, partnerships and parenting, he says. It can look like multiple unfinished degrees, regularly switching jobs, starting but not finishing tasks; things that can cause “really profound damage to their self-worth and their self-esteem”, Bellgrove says.
That doesn’t mean that adults with ADHD can’t cope with anything. Rose says in her experience ADHD adults tend to excel at responding to crises, creative problem-solving and tasks that require deep concentration. She knows that her ADHD causes significant impairments for her. But she also knows her strengths and her weaknesses, and is better at making the most of the former and managing the latter.
This can be typical for adults with ADHD, Bellgrove says, who hold down high pressure jobs: “Often what you’ll find, I think, in those situations – and it’s probably borne out by the media reports – is that in order for them to do that, they’re literally running at a million miles an hour to keep all those balls in the air,” he says. “The downside of that hyper-focus is really a period of almost exhaustion that ensues, because they put so much of their cognitive effort and cognitive resource into completing that that they’ve got nothing left at the end of the day.”
Another essential feature for a diagnosis of ADHD to be made in adulthood is that the symptoms must have been present since childhood. “If one looks back, you should be able to pick up some telltale signs,” Bellgrove says.
So if ADHD is a lifelong neurodevelopmental condition, why the increase in diagnoses now? Sciberras says one theory is that some of the adults being diagnosed today might not have been picked up as children because their presentation was more attention-deficit than hyperactive. “They may not have been picked up by their parents or by teachers, but adults themselves are recognising the difficulties that they’re having in this area and they’re then going forward for assessment,” she says.
This could also explain why in childhood, more boys than girls are diagnosed, while in adulthood, the reverse seems to be happening. There’s growing evidence that girls are more likely to present with the attention-deficit symptoms, which can be more day-dreamy and inattentive, than the disruptive hyperactivity that seems to be more common among boys. As such, girls may be less likely to be diagnosed in childhood, but are instead being diagnosed as adults.
Another possibility is that, as more and more children are being diagnosed with the condition, their parents are realising that they too meet the diagnostic criteria. This is hardly surprising, given that ADHD has a strong genetic component, and tends to run in families.
One of the issues addressed by the new guidelines is the question of screening everyone for ADHD in childhood to pick up those who are currently slipping through the cracks.
While the guidelines advise against this, there is clear evidence that some are more likely to meet the criteria for ADHD than others: for example those with mental health or neurodevelopment disorders, people with a family history of ADHD, with substance use disorders, in prison, with acquired brain injury, with sleep disorders. Screening among high-risk groups could pick up those missed diagnoses; one study in Ireland did just that, and found around 20% of more than 630 adults attending a mental health outpatient clinic met the symptom criteria for ADHD but only one in 10 of them had previously been diagnosed.
Diagnosis doesn’t just open up the possibility of treatment – both pharmacological and psychological – it can be life-changing, Bellgrove says. It can help people understand why they have struggled their whole life.
“[There’s] a sense of loss for the period that’s gone before, where they feel like they could have been functioning at a better level for themselves, that they wouldn’t have had to struggle with the self-doubt, the negative self-talk,” he says.
“Often that can be a period of adjustment, because you might get an adult who is newly diagnosed and feeling a little pissed off, to be honest, that now their life makes sense.”