Here is a thing I have been pondering for a while now.
Sometimes when I talk about ADHD on the internet, it feels like I’m talking about one thing, and people are hearing something else. I think this is because there are two working models of ADHD going around, and we’re all kind of using the same term for different things.
There’s ADHD-as-identity: non-linearity, divergent thinking, sensitivity, extreme energy states, passionate emotions, high creativity
And ADHD-as-disorder: executive dysfunction, emotional dysregulation, dopamine deficiency, timeblindness (pick your pathology I’m sure it can fall under here)
Defining ourselves using the DSM (ADHD-as-disorder) is a trap, because our self-concept will forever be tied to the pathology paradigm. If your “executive dysfunction” improves, if you cease to tick enough symptom boxes, you also lose your identity.
Identity is important — it’s how we understand our relation to the world and how we find our community, but it’s not something that we should be letting the medical establishment define for us.
Once you are labelled with a mental disorder, it follows you through your medical records forever, and it affects the kind of medical care you receive. Very rarely do these labels change, despite the fact that people do — personalities are not static, neither are circumstances, and we are always learning.
The DSM definition of self contributes even further to the permanence of diagnosis, because it makes us conceptualize our distress as an intrinsic part of who we are as people.
I got diagnosed with bipolar disorder, but I don’t meet the criteria anymore. Rejecting the story I was told about bipolar being a permanent aspect of my identity that could only ever get worse allowed me to step back and identify the causes of my extreme mood states, most of which had to do with the way that I was trying desperately to fit myself into the ideal of a “normal person” to the detriment of my health.
When I began to lean into the messy, awkward, painful parts of myself, accepting the socially unacceptable and the limits I’d been trying to push past, my moods got less intense, and my distress eased. I didn’t push through hardship and come out the other side victorious, I stopped and turned around, and started saying no.
I don’t struggle with “executive dysfunction” much anymore because I don’t try to do things in a linear, mono-focused way. It’s not that I healed or embraced my superpower or whatever — I just stopped fighting myself.
Do I still forget everything all the time? Yes! Do I take forever to start projects and then abandon them? Constantly. Do I get sucked into random rabbit holes of interest and lose entire days of my life? All the time. But I refuse to feel bad about these things or call them disordered. The problem is society’s rigid, narrow rules for what is an acceptable way to be a person, not the fact that I fall outside of them.
Biological reductionism gives us such concepts as “once an addict, always an addict” and “One can have a mental illness and good mental health” — a sentence which makes absolutely no sense unless you’re considering a mental illness diagnosis to be a permanent aspect of your identity that doesn’t change even if you no longer meet diagnostic criteria.
To avoid this trap, I think it’s necessary to define ourselves outside the DSM’s parameters.
This is a project that autistic people have been working on for decades now, ever since “Don’t Mourn For Us”. I’ve seen it said that the DSM definition of autism actually describes a distressed autistic.
Michelle Swan wrote that she couldn’t get a diagnosis for her son because “my autistic way of parenting supports my son too well for him to be traumatised enough for a diagnosis” — a pediatrician basically told her to put him in school and come back when he was suffering enough.
Things like restricted, repetitive behaviors and rigid routines can be seen as coping mechanisms for dealing with an overwhelming world, not necessarily traits that define who an autistic person is.
I think we could say the same for the DSM definition of ADHD. Being easily distracted or fidgeting are other kinds of responses to a world that is either too much or too little. But I am not my distraction — I am my sensitivity to stimulus, my prolific ideation, my spiral style of doing and being.
My distress is not my identity, it’s a side effect of my disposition running aground on society’s rules. Would you tell a beached whale that was his identity now? That all he could do to keep from drying out was splash himself with water for the rest of his life? Or would you try to put him back in the ocean?
ADHD-as-identity does not negate our distress, but rather, makes more room for us to understand it in a variety of ways, and opens up possibilities for change that extend beyond the individual to society at large. It’s not just a you problem, it’s an us problem, and we fix it by changing our culture, not ourselves.
ADHD-as-disorder closes those doors, tells us our distress is only ever a dysfunction inside our bodies, and all we can do is “manage” and “treat” ourselves. It also leads us to fiercely defend our disorder, and call anyone who questions the psychiatric definition of self “ableist”, an infuriating projection. The pathology paradigm defends itself by enlisting your very identity.
Do we need another term? Probably — the acronym has “deficit” and “disorder” baked in. But words are always changing their meaning to fit cultures, and the term “autistic” has a pathological history, too.
We use the words we have. Language is messy, as all human creations are. What will always be more important to me than words is the meaning underneath them, and how that meaning shapes the way we see ourselves, our place in the world, and our possibilities.
I don’t have all the answers! I am but one person who writes things on the internet! Should we start a collective project to define ADHD-as-identity? How does it look in your own life? What kind of dilemmas are you grappling with here?
Send me an email (firstname.lastname@example.org), I would love to chat about it.
I think framing neurodivergence as a adaptable response to environmental makes me feel more connected and part of the world, which is part of what the problem is, right? Takes all the acronyms out of the mix and names the fact that we, like other species, are going to adapt and respond to the changes in our environment.
A species stops ignoring the sensory information it gets from its environment and because of this causes harm to self & environment? Turn up the sensory information - do you hear/feel/see it now? A species puts certainty in place of responding to cycles and change in their environment? Turn up the radar.. notice the changes... stop being distracted from what your body needs and feels moment to moment.
Remember when they said animals getting covid could die if they lose smell/taste because those are survival mechanisms? What is happening to us in a world where we ignore our own needs and feelings and don't acknowledge others either? Numbing our senses hasn't helped.
Sorry, a bit of a rant. But I am all about making sense of myself in the world. I belong here. My neurodivergence is supposed to help me and all of us. Trying to make us all linear thinkers who cannot be in community has led us right to climate change. Maybe those of us who can't ignore the information we are getting anymore will eventually help us start responding to ourselves, one another and nature in a way that is interdependent and needs-based.
And if not, may we at least be able to connect with ourselves and those who also see this and us. Having that available to at least some of us is better than none.
Thank you Jess. Your articulation of the cultural prison we inhabit is exquisite, poignant, and opens my eyes to the way out. <3