When you think about Attention-Deficit/Hyperactivity Disorder (ADHD), what sort of person do you picture in your head? Do imagine a child or a teenager, a vision no doubt informed by the spike in diagnoses in kids these past few years? Do you picture a boy, perhaps intuiting that males are four times more likely than females to be diagnosed with the disorder? Or do you picture a woman in the bucolic English countryside, raising her children along with an assortment of animals and vegetables? Why not?
Rebecca Schiller's life, in theory, sounds like the the antithesis of an ADHD story. She and her family had left the bustle of London for fresh air and freshly laid eggs. Yet as she describes it, "I was spinning through space; except space was my desk, the plot, and the inside of my head." She was clumsy and distressed. She wondered if she was bipolar. Instead, eventually, she was diagnosed with severe ADHD.
In "A Thousand Ways to Pay Attention: A Memoir of Coming Home to My Neurodivergent Mind," the author and activist invites us to expand our understanding of ADHD — a term that is too often as flippantly and incorrectly tossed around as OCD is. Entwining her own experience with the recorded histories of the women who tended the same land for generations before her, Schiller shows a different side of the condition, and makes a persuasive plea to view it "not as a necessarily an illness that needs to be fixed."
Salon talked to Schiller via Zoom recently, as she chatted amiably underneath her "Farage In Prison" poster, about what she wishes she'd known about ADHD, and what advice she has for others who feel they may meet the description we call "neurodivergent."
This conversation has been lightly edited and condensed.
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Many of us here in the US picture a person with ADHD as a teenage boy. We think about technology. We think about gaming. We think about masculinity. We don't think about how you can be in nature with it. You can be gathering eggs and gardening and still have this very busy mind, still have this condition that was not invented by Steve jobs or Mark Zuckerberg. What am I getting wrong, as someone who is outside of that experience, about this condition?
"We're characterizing it from the outset as a lack of attention. My experience is not a lack."
Of course it's different for everybody, which is one of the things that we as humans get wrong about everything, don't we? We assume the way that we feel and think is the way that everybody feels and thinks. For me, it starts with the words and the acronym, Attention Deficit Disorder. We're characterizing it from the outset as a lack of attention. My experience is not a lack. It's an abundance, sometimes an overabundance.
When you look at the science and when you talk to doctors, particularly those who are a little bit more forward thinking, they will talk about how attention is differently regulated. That assumption that ADHD people can't pay attention just isn't born out by the intense, hyper focus that lots of ADHD people can put to the things that switch their brains on. There's the assumption also that even when something is a condition or a disorder — neither of which are words I particularly like — that there's a taint of laziness. If you just tried harder, you could learn to find ways to pay attention to this thing.
For me, when it's something that I struggle with, it's not that I'm not trying. I'm probably trying a hundred times as hard as the person sitting next to me. It's that unless there is a way for me to make my brain find it engaging, my brain won't work. It's white noise and fuzz. I write in the book about doing this in math lessons, trying to get the bit of my brain that wanted to work with the numbers to make the connection. Those two sides of it are where I would start.
You say early on in the book, it felt like "an interior pile on." And you were displaying symptoms that I would never have associated with ADHD The dyspraxia, the clumsiness, the thoughts of self-harm. The intrusive thoughts. You knew something was wrong, How did you feel when you got that diagnosis? It did not come easily, efficiently, or necessarily entirely accurately, as we know from modern psychiatry.
After an instant level of shock of confirmation, even though I had pieced it together and felt pre-certain that's what it was, my first reaction was relief. The quest to work out what it was and get someone to help me with it was over. I had a reason, and therefore I could perhaps receive some treatment.
Something that I have found pretty common talking to late diagnosed people — not just ADHD, but autistic people too — is that then there's layers. There's the looking back at the rest of your life and your childhood, unpacking things and realizing that this was because of this. If like me you have the privilege and ability to be a very effective masker — hiding all your ADHD stuff by never being late, always being tidy, sitting very still, never interrupting — then there's the working out which bits of you are the masks, which bits of you are the ADHD, which bits of you are the negative reaction to doing all the masking for so long and not realizing why you felt pulled in two directions.
That is quite a challenging process to go through. Rewarding, hopefully in the end, but quite challenging to look at the various layers of yourself and try and work out which bits are going to stay and you're comfortable with, and which bits of the behavior or feelings you can challenge and change.
You contextualized your experience in this book by tying it to the land, the history, the other women who have occupied the same space in time. It all comes full circle when you get that insight that ADHD is something that exists kind of out of time. Why was that such an important part of the storytelling for you?
I don't think I knew the answer to that when I started writing. I started writing this book before I knew ADHD would be part of the story. I didn't plan to include any stories of the women of the land either. It evolved out of trying to find a way to talk about where I was and how I was feeling, in a way that reflected the way that my brain works. This is very much is a neurodivergent trait, the spidering out naturally in lots of directions, putting things together, looking for links and pattern spotting.
I was being diagnosed as the pandemic was happening. I felt like I might as well do it the way that follows my instincts, write it the way that appeared to me. I now realize that meant showing the layers of time in the land, bringing out the stories of women who had been erased, who had been here having experiences, living lives that because of the way society was and sometimes still is, wouldn't be found.
You talked about that masculinization of a whole condition, but that's just a replication of the masculinization of the whole world. I was finding these women, bringing them out, listening to them, and through that, finding a way back to myself and finding other ways of looking at time. I was looking at other places and cultures and times, and the way that we think about time working and what's important and what isn't. Showing it not as a monolith, not as actually true and concrete. It's sort of disruptive, and also a way to bring readers who might not have the kind of brain I have into that multiplicitous thinking. I also find it very comforting. I genuinely find the thought of those women very comforting and helpful. And I think about them all the time.
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There is this sense that we don't feel those ties to the past. We don't feel those ties to the other people who occupied this space and who may have actually gone through very similar struggles, and didn't have words for them.
We're very good at shutting ourselves, I am as well, in our very contemporary 2022 box with our own view of how things are. It's quite difficult to face up to what you see if you look outside of that, if you realize that there's all those layers of time beneath you. There's some difficult stuff there, some amazing stuff. Some things that challenge the beliefs that we have grown up with or are conditioned to or have at our hearts. I am trying to write about neurodivergence not as a necessarily an illness that needs to be fixed, but as a way that brains work and have always worked.
A lot of the issues are about trying to constrain and tame and force people out of the ways of doing things. What would we do to little kids? "Sit still, fold your arms, face front, hands to yourself, don't get up, don't interrupt." That's a lot. I realize now, I learn with my hands. I touch things. I would never have done that at school as a kid. I don't remember ever doing that, but I would've found it so much easier to learn had I been able to get up and touch things. Making people look at different times in different ways, in different views is a way of challenging them to step out of their own prison and paradigm of thought.
The idea that sitting still is the way to learn is a very modern one. It's based in modern education and modern schooling. It is not based in anything other than the convenience of a system. It is not the way that humans have always learned things. It's not the way that humans have always done things, but we have pathologized certain types of behaviors and said, "Now they are abnormal because they are abnormal for this present moment in history."
"If you read the DSM ADHD criteria, it's a list of things about me that annoy other people."
They're inconvenient. They affect other people negatively. If you read the DSM ADHD criteria, it's a list of things about me that annoy other people, that make other people's lives difficult rather than any of the internal struggles. I would hate to be someone saying, "ADHD, neurodeficiency is just a superpower and it's fantastic." There are loads of really difficult and complex things about it. People really, really struggle, can't magic that away. But that disconnect between how you want to be and how you think and how the world tells you have to be and think is profoundly complicit in that distress.
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You talk about the relief of a diagnosis and yet there is also that ambiguity to it. There is also that imperfection of it. You talk about your own ambivalence with the words, "ADHD and extreme hyperactivity."
But "neurodivergent" is also an imperfect label. We need labels, and yet once you have a label, it does sort of cut off all the other words. How do you describe yourself now, and what do you want people to know about that description?
I'm still evolving in how I think about it. If I'm going to talk about ADHD, I will say "I am" rather than "I have." It wasn't set up to be conjugated that way. The writer in me hated saying it, it sounds clumsy. I prefer "a neuro divergent" partly because the more research I do, the more I spot autistic traits in myself. I see the blurriness between those two definitions anyway. I like the term that I talk about in the book, "neuro emergent." It's not one that you can trip off the tongue because it requires a lot of explanations, but that feels spiritually like the right place because it's an evolving term. It's emerging itself.
There is so much about neurodivergence and ADHD that is not understood because no one's been trying to understand it. I wonder if in fifty years this will all look very different. There will be more labels, or less labels. I suppose ultimately what I would like to tell people is that, "I am me. This is it." This is all part of me, just like for many people, the things they love and hate about themselves are all tangled up. The labels are useful, but they need to, like all words, be able to evolve in order to contain the truth which expands.
If someone reading this is feeling uneasy about themselves and feeling that something is wrong, what do you wish somebody had said to you?
What helps me now is that when I have that, "Oh God, I'm wrong. What am I doing wrong?" feeling, I now, instead of just listening to the voice that says, "It's because you terrible person were five minutes late," I ask, is there actually a moral problem with this thing? Tidiness, for example. Logically, is it morally bad to be untidy? Is there anything evil about untidiness? Is there anything good about untidiness? If you think about nature, untidiness is actually wildly beneficial.
That really helps me to be like, "Okay. I see why I feel like this. Perhaps this is just a complete nonsense message that I've been getting. Maybe being untidy doesn't mean you're a bad person, because untidiness is not something which logically you can put a moral judgment against." Then I get to remind myself that internal voice isn't made of sense and it isn't made of me. It still upsets me, but I can keep it over there. Things that upset you aren't necessarily true. The things you think that are bad about yourself are not necessarily real. And if you can find a way to access another perspective, it can allow you to see beyond the messaging that we've all been very well fed.
Let me ask you about that, because it's very intentional that you put in that moment in the book when you are told, "Well, you could think of this as a gift." How do you feel about that kind of narrative?
I think it is true and untrue. That's another systems thinking issue, that things have to be one thing or the other. Something is bad or good, right or wrong, happy or sad.
Gift or a curse.
Lots of the ways that I am and the things that I'm good at are because of these traits. They are gifts. They enable me to see things in different ways, to think of stories and to go, "Something's broken outside, give me five minutes in the shed and I can find three bottle caps in a pipe and I can stick them together and make something to fix it." It is also a curse, as I hope that demonstrates. That's true of lots of things in our lives. Sometimes they're good, sometimes they're bad, sometimes they're bit of both. Sometimes you get to choose and sometimes you don't.
I don't like to do media bashing, having done quite a lot of journalism myself, but the way that we're encouraged to write up our stories as journalists is, "We really like this. It's fantastic. It's the best thing ever. Everyone should do it," or, "This thing is evil." But the way that my brain operates is that I tend to see across things. I will see the various, "This is good; this is bad and this relates to that." Struggling to present everything as one thing or the other has been another thing that has caused me to question my own judgment and decisions, and feel quite disorientated. I accept that it's a gift, but it's a gift that also bite. It stings. It's like a really fluffy, sweet animal, that occasionally savages you and bites your neck.
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