On Valentine’s Day 2020, aged 37, I was given a gift that changed my life: a diagnosis of attention deficit hyperactivity disorder (ADHD). Like an estimated 20 per cent of the population I learned I was neurodivergent: a term for a range of neurological and mental health conditions where the brain processes and reacts to information in ways that diverge from the norm.
I’d been this way my whole life and all the things that had felt like such inexplicable, shameful, must-be-concealed struggles were, in medical terms at least, now entirely explicable. After an extended mental-health crisis I had finally asked the right doctor the right question and he had answered it with four letters: ADHD.
A key barrier to an earlier diagnosis for me and many ADHD people is how misunderstood the condition is still. Neither I, nor knew many of the professionals around me, how differently it can present or that a lifetime of masking symptoms could distort and camouflage them.
The Royal College of Psychiatrists describes ADHD as a neuropsychiatric condition – “the extreme of behavioral traits that are common in the general population” – and suggests it is triggered by a mix of genetic, social and environmental factors. Like most clinical definitions it goes on to characterize ADHD as a mixture of poor concentration, distractibility, hyperactivity and impulsivity.
I’d been a good little girl who sat still, behaved and didn’t fidget and then a woman who was tidy, early for meetings, calm and organized. I’d written 90,000-word books and been a charity CEO and so was sure I had an excellent concentration span. As I believed ADHD was little more than an excuse for a naughty child to bounce off the walls, it’s no wonder that, back then, I thought it had nothing to do with me.
Like most people, my understanding of ADHD was actually misunderstanding and ableism. I’d blanked out that I never managed to learn my times tables and had no idea that my capacity to sit for 18 hours at my desk without moving was a symptom – hyperfocus – nor that my fixation on being tidy, early and organized hid a natural tendency for the opposite. My revelation came when I stumbled on an article about 10 women living with ADHD. Here I was, reflected in these women: outwardly performing success and going beyond any normal breaking point to achieve what seemed to come more easily to others.
I learned that many people, including lots of women and girls, do not fit the traditional diagnostic criteria. The complexity of our symptoms has been ignored, the prevalence of severe emotional dysregulation rendered invisible and the impact of masking symptoms on how they might manifest has not been taken into account.
Crucially I discovered that people with ADHD do not have a deficit of attention – but that it is regulated differently: an abundance of concentration for tasks that capture our attention and a struggle to get our minds to engage with something that doesn’t. My school and university results and what I’d achieved in my career did not, it now appeared, rule out ADHD.
As I read on, many other confusing things started to make sense and I wanted to reach back through the decades to the child, teenager and new mother I once was.
Two years on from my diagnosis, these are things I wish I had always known about ADHD.
ADHD can be life threatening
Living with a brain I didn’t understand in a world that isn’t designed for it is destructive and dangerous – a personal experience I now know is validated by research. There are studies that show how much criticism ADHD people contend with and the double whammy of feeling the negative impact of it more deeply. There’s evidence that the poor balance that has me constantly walking into doors and falling over might be explained by the amount my body naturally moves from its center of gravity.
Though it’s hard to hear, it’s important to know that I was never making a fuss about nothing. ADHD means I am twice as likely to die prematurely than a neurotypical. Although the primary cause of death is an increase in accidents, Canada’s Archives of Suicide Research study confirmed in 2021 that people with ADHD were five times more likely to attempt death by suicide than their neurotypical peers. Perhaps unsurprisingly given that the study also confirmed an elevated risk of developing depression, PTSD, anxiety and other mental health conditions.
People will dismiss your condition
Despite these strong statistics I’ve experienced plenty of dismissal and any new article on the topic is often met with the cynical presumption that ADHD is having its five minutes of fame. Though there are practical ways neurodivergent people can organize their work and home lives to minimize distress and increase comfort, I have to scream into a pillow every time I read a recommendation to “try making lists” or “download a reminders app”. The exclusive focus on practical tools undermines the profound reality of what we are living with as do comments such as “everyone is a little bit ADHD”.
It is painful to see an overwhelming personal reality dismissed as a trendy fad, something with a quick fix, an excuse for bad behavior.
You have been masking your symptoms
Masking is common amongst neurodivergent people, perhaps most particularly if gender, race, sexuality or other factors make the negative consequences of appearing different or difficult more extreme. I am beginning to see how ingrained my need to camouflage my traits is and that, despite doing so very successfully, the fear of being caught out has been a key driver and disrupter in my adult life.
As Grace Timothy, whose podcast Is It My ADHD? was launched last week, explains the ability to cover up symptoms can be useful but comes at a cost. “I masked my traits for decades,” she says, “without any idea of the toll this was taking on my mental health. As a child the impact of this showed up as OCD and later in life as eating disorders and various anxiety disorders.”
The clues to the strain my own masking place on me are apparent in an end-of-term school report I had to write for myself, aged nine. Despite being a model pupil who was – after some initial blips – doing exceptionally well in class, a third of my self-penned review was harsh reflection on needing to try harder. Another third was dedicated to critical words on how I rushed, made mistakes, talked too much or forgot things and a list of the things I was not good at. None of this matched the objective reality of my performance. Even then it was a look at what I was frightened of lifting the mask to find.
ADHD is under-diagnosed in women and other minoritized groups
I did lift it, shortly after the 2019 Nice best practice guidance finally acknowledged that ADHD is “under-recognised in girls and women” and in the same year that a group of expert professionals called for a radical shift in the way that ADHD is diagnosed and researched. They explained that “females with ADHD show a somewhat modified set of behaviors, symptoms and co-morbidities when compared with males with ADHD” and that “they are less likely to be identified and referred for assessment and thus their needs are less likely to be mead”.
The unhelpful idea of women having one type of ADHD and men another needs expanding with a nuanced, intersectional approach. But in it there is something useful: evidence that the diagnostic criteria is far too narrow. ADHD is still too easy to miss. Unlike many, I was fortunate to be assessed using a computerized test designed to look for what lies beneath our compensation strategies.
Despite insisting I was not hyperactive I scored on the 99th percentile for hyperactivity, the woman conducting the test explaining that she’d tested many other women whose constant movements were socially acceptable by being almost imperceptible.
Now that those who didn’t fit the previously narrow criteria are beginning to be officially recognized there is a backlog of undiagnosed people to get through. Meanwhile, pandemic living’s lack of structure and increased stress created the perfect scenario for making ADHD traits more obvious and harder to cope with, boosting the number of those seeking diagnosis and over the past two years already lengthy waiting lists for referrals have grown.
You aren’t broken
These facts and statistics would have been useful to my younger self but even more helpful would have been some acceptance and love for the way my complicated brain works. Though ADHD is a problem that causes me to struggle, it is knowing who I am and why I feel and think the way I do that has helped me most.
My psychiatrist didn’t use the term “neurodivergent” when he diagnosed me but the political concept is in line with what he did go on to say. He talked of a study focused on the Ariaal people, a nomadic tribe of northern Kenyan cattle herders, whom researchers tested for a gene linked to ADHD behaviors. They discovered that when it was found in those still living a nomadic life they were the healthiest and most successful in the group, but that the carriers who had moved to a more static life were the least healthy and struggled the most.
The idea of neurodivergence draws on the social model of disability and, under its banner, people who had been characterized as sufferers of a condition with abnormal symptoms become individuals whose brain function may diverge from the average more than most but who are not broken. I wish I had known the story that ADHD might be what happens when us nomads have to settle down.
Maybe I would tell my younger self this but perhaps not. Maybe I’d simply instruct her to listen to a podcast at double the normal speed as I have recently done for the first time. I’d watch her face as words that have previously failed to travel from her headphones to her brain finally connect and see her realize that she wasn’t too slow to catch the meaning after all. Perhaps this is what I most wish I had known : that I was never stalling at half speed. I was always zipping along at twice the pace.
Earthed by Rebecca Schiller is out in paperback now (£9.99, Elliott & Thompson)