We desperately need to find a new way to talk about attention deficit hyperactivity disorder.
In the past couple of years, we have entered a new age of ADHD awareness. The stereotypical image of a ratbag, hyperactive little boy is falling away and slowly medical professionals, policymakers and regular people are coming to view the diagnosis as a serious, often lifelong and life-altering condition, affecting a huge number of people. Part of this process has been retroactively uncovering the scores of people who slipped under the treatment radar as children.
But, as more and more adults connect the dots and get diagnosed, the way we discuss the condition is changing.
Rather than being an omen of difficulties to come, for many of us it’s amazing news. A validation that, yes, things actually were as hard as they felt, and no it wasn’t just a personal failing. A diagnosis is the thing that allowed us to forgive ourselves and finally start healing.
We are forming a robust, self-determining community for the first time. And while, of course, we talk about the struggles that come along with the condition, we’re also discussing the neutral and even the positive parts of ADHD too. Like, for example, how a big, broad attentional style can foster amazing ideas, or, conversely, the treasures buried deep within a hyperfocus rabbit hole.
We’ve started viewing ourselves as ADHD-people, not people with ADHD, and we’re learning to view our brain differences as intrinsic to who we are.
People are now asking the question: what if, as a culture, we started thinking about ADHD more as a category of mind, rather than just “a problem”?
Imagine what society would look like if our educational institutions, workplaces and social systems were flexible enough to adapt to people whose brains work differently, rather than expecting individuals to do all the contortion.
To be clear: better access to treatment, workplace and educational affordances, and government support are still absolutely vital. We aren’t saying it’s incorrect to call ADHD a “disorder”, just that it might be a touch too narrow.
The problem is “ADHD the medical condition” must reduce your quality of life – otherwise, from a legal and medical perspective, you don’t have it. But something about that feels so unfair; that this core part of who we are and how move through the world can only ever be defined by the impairment it causes us.
So, how do we resolve this ever growing tension between disorder and identity?
Well, perhaps the root of the issue is how much pressure we are putting on a diagnostic term. Our current definition of ADHD was only ever intended to help determine who would benefit from legal access to highly regulated medications, and additional support services.
In recent years I’ve spent a lot of time trying to explain the ways my brain works differently to the neurotypical people in my life. With practice, I’ve come up with a pretty decent metaphor. It’s the difference between walking and sailing.
For neurotypicals (those without a neurodevelopmental condition), getting things done is like walking on land. You’re taught how to do it basically from birth, and most of the time you can head in a fairly straight line. Sure, there are hills and obstacles to avoid, but you can usually see them coming, and for the most part your speed depends on how much energy you have. It’s not always easy to start running, but it’s usually within your control.
But – at least for me – getting stuff done is much closer to trying to sail a little boat through the sea. If you’ve never been taught to sail, you’re really at the mercy of the winds and the waves. Sometimes they propel you forward at breakneck speed, sometimes the water is so choppy you’re just trying to stay onboard. Perhaps you never learned your boat has a sail, so you’ve been rowing against the waves for years and years, instead of unfurling it.
However, once you learn how to navigate, you can work with the ocean. You can ease your way out of the storms, and find currents to whisk you where you need to go. Sometimes the journey will still be slow and rough, but with the right training and the right gust of wind, you might even find yourself reaching the destination faster than those travelling on foot.
From what I’ve seen of the world, there are plenty of people who have “ocean brains” like I do, whether they meet the criteria for a formal ADHD diagnosis or not.
So maybe we need to add another, less medical, word to the conversation.
I think education systems could really benefit from talking to children about what kind of internal terrain they are navigating, and adjusting teaching methods to match. It would probably help grown-ups to have some kind of non-stigmatised, non-medicalised language to describe their patterns of productivity too.
The only problem is “ocean brain” sounds a little woo woo to my grown-up ears. Luckily English already has a more sophisticated word we could adopt: “pelagic”, meaning “relating to the open sea”.
Imagine if people with all different varieties and levels of symptoms identified as pelagic, and came together as a community around the shared experiences this kind of brain brings. Then, alongside it, we could continue to use the legal/medical term for those of us experiencing the quality-of-life-reducing disorder commonly associated with pelagism: ADHD.
(Which, by the way, means those of us with the disorder can start saying: “Oh I’m seasick today.” And I think that’s pretty darn cute.)
I don’t know if adding another label will suit everyone’s needs, but having a cultural word for how I think would really help me grapple with the interwoven web of my identity and my disorder.
In a world where we have these two separate words, then yes, I want to cure my ADHD. But that doesn’t mean I don’t want to be pelagic.
I love the ocean that is my brain. I know a lot of other people who love their ocean brains too. We just want help learning to sail, and maybe some seasickness tablets to ease the way.
This is an edited extract from The Year I Met My Brain: A travel companion for adults who have just found out they have ADHD, by Matilda Boseley. Out 3 October from Penguin
