Wwhen Zoë Rose found out she was dying four years ago, at the age of 38, at the end of the Bruce Willis movie The Sixth Sense when the Bruce Willis movie The Sixth Sense then (spoiler alert! ) It is revealed that the main character was dead the whole time.
“Same scenario, but you had ADHD the whole time,” says Rose. “You have to rethink your whole life.”
ADHD gave her a new lens to understand so many things about herself: why she couldn’t keep her house clean, 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, their 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 came across increasing amounts of information about ADHD that made sense to her. But she was a grown woman with a great job, a stable marriage, and was successfully raising 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 became ill, and Rose had to take responsibility for many more of life’s mundane, everyday tasks, such as renewing the car registration and paying the bills.
“Looking at the paperwork and all this stuff he’s doing, I just couldn’t get my head around one bit,” she recalled. The wheels came off the bus well and truly. “If the criteria for having or not having [ADHD] is if it’s ruining your life, well, OK, looks like I’ve 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 is one of the most well-researched conditions, says clinical psychologist Ass Prof Emma Sciberras, an expert on ADHD at the Center for Social and Early Emotional Development at Deakin University. But it is also one of the most stigmatized and misunderstood.
“There is increasing recognition that ADHD is not just boys who are naughty,” says Sciberras. “People understand that ADHD is actually a neurodevelopmental condition — what that means is that it’s something that progresses over time.” While the condition by definition presents itself in early childhood – before 12 years – 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 from being diagnosed with ADHD as adults. Some commentators have questioned whether the condition may be overdiagnosed or even become “trendy” due to exposure on social media.
But if anything, ADHD is underdiagnosed in Australia, particularly among women, says Sciberras. “We are seeing increases in diagnoses, but … in Australia there is little evidence of a diagnosis rate above and beyond what you would expect is the community prevalence of ADHD,” she says. The current sense of increasing diagnosis, especially in adult women, may simply be a matter of catching up.
Obtaining reliable data on ADHD diagnoses in Australia is challenging. It is estimated that around one in 20 Australians have the disorder, and a 2019 report suggested that many more men than women were diagnosed during their lifetime. However, cognitive neuroscientist Prof Mark Bellgrove, of the Turner Institute for Brain and Mental Health at Monash University, says this may reflect under-diagnosis in women – particularly in childhood and adolescence – rather than a genuine gender difference in presentation. “In childhood, there is a gender difference that favors more boys being diagnosed than girls, while in adulthood this does not seem to be the case,” he says. “I think it’s more likely that girls are not detected in childhood because their presentation is different.”
Recognition of ADHD both in childhood and adulthood is expected 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 an important step toward 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 people with ADHD,” says Bellgrove. “It is also hugely symbolic, for people living with ADHD in Australia, that the NHMRC has now approved the guidelines; effectively, it recognizes their lived experience.”
The challenge with ADHD diagnosis has always been that many people probably tick at least a few symptom boxes – such as regularly losing or misplacing important things, short attention spans, inability to complete tasks, restlessness that is difficult to control, impulsive behavior, being too talkative, easily side-tracked.
But Bellgrove says that for ADHD to be diagnosed, those symptoms must be responsible for persistent, long-term impairment. “It’s about the adults who report that they don’t cope with the symptoms of their ADHD in multiple aspects of their daily life”, such as education, job, partnership and parenting, he says. It can look like multiple unfinished degrees, regularly changing jobs, starting but not finishing tasks; things that “can cause really deep damage to their self-worth and their self-esteem,” says Bellgrove.
That does not mean that adults with ADHD cannot handle anything. Rose says in her experience ADHD adults tend to excel at crisis response, creative problem solving and tasks that require deep concentration. She knows that her ADHD causes significant limitations for her. But she also knows her strengths and her weaknesses, and is better at creating the former and managing the latter.
This can be typical of adults with ADHD, says Bellgrove, who hold high-pressure jobs: “Often what you find, I think, in those situations—and it’s probably evidenced by the media reports—is that for them to do, 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 near-exhaustion that follows because they put so much of their cognitive effort and cognitive resource into completing it that at the end of the day they have nothing left. “
Another essential feature for a diagnosis of ADHD to be made in adults is that the symptoms must have been present since childhood. “Looking back, you could pick up some telltale signs,” says Bellgrove.
So if ADHD is a lifelong neurodevelopmental condition, why is the increase in diagnosis now? Sciberras says one theory is that some of the adults diagnosed today may 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 recognize the difficulties they have in this area and then come forward for assessment,” she says.
This may also explain why more boys than girls are diagnosed in childhood, while in adulthood the reverse seems to be the case. There is increasing evidence that girls are more likely to present with the attention deficit symptoms, which can be more dreamy and inattentive, than the disruptive hyperactivity that seems to be more common among boys. As such, girls are less likely to be diagnosed in childhood, but are instead diagnosed as adults.
Another possibility is that as more and more children are diagnosed with the condition, their parents realize that they also 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, people with mental health or neurodevelopmental disorders, people with a family history of ADHD, with drug use, in the 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, finding about 20% of more than 630 adults attending an outpatient mental health clinic met the symptom criteria for ADHD, but only one in 10 of them had been previously diagnosed.
Diagnosis not only opens up the possibility of treatment—both pharmacological and psychological—it can be life-changing, Bellgrove says. It can help people understand why they struggled throughout their lives.
“[There’s] a sense of loss for the period before that, where they felt they could function at a better level for themselves, that they didn’t have 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 feels a little bit pissed off, to be honest, that now their life has meaning.”