I have been watching ADHD Twitter for a while and have started capturing useful threads and transcribing them for legibility and convenience.
- External vs subjective experience
- Giftedness + ADHD
- Object permanence
- Not personality
- Bad diagnostic instruments
- ADHD as a cause of PTSD
- A metaphor for late diagnosis
- The shock of late diagnosis
- On habits
- Cultural politics & philosophy
External vs subjective experience
From iza <@plant_homo>:ADHD might be easier for neurotypicals to understand if you know that ADHD means that our baseline dopamine is lower than a neurotypical’s.
A thread on understanding ADHD a little bit more.
The most obvious result of this is depression, but not like clinical depression. It looks similar though. Boredom, nothing seems exciting anymore, and even surface level things like not getting out of bed and bad personal hygiene are there. Because as you can imagine, low dopamine sucks. In its basis, it causes underexcitement. Someone with ADHD will take any opportunity for a shot of extra dopamine.
To an outsider, this looks like intense and always changing interests, inability to focus on mundane tasks, recklessness with money, overeating and snacking, always doing multiple things at once, inability to sit still, etc etc. And that’s what ADHD was named for: what it looks like from an outsider’s perspective. The hyperactivity. The symptoms that are inconvenient for neurotypicals.
ADHD is a disability. It causes us to be impaired or unable to function in a neurotypical world. It impacts our schooling, socialization, work etc.
But that’s not how it’s known to the outside world. People don’t know about how it feels for us to be understimulated, to have a brain that just. will. not. do what you need it to, to be marked as lazy because our symptoms are misunderstood. The biggest thing of which is the inability to start and focus on mundane tasks. When a brain is at low dopamine, it does not want to do something that will lower that even more. It'll always be looking for something to increase it. And that’s why you’ll often see us on our phones. They’re a handheld dopamine machine. Social media, games, music, all the information about our special interests is at our fingertips. That’s extremely interesting and tempting.
And before anyone compares this to addiction: stop it. Right now. All we want is the normal amount of dopamine. Compare it to being thirsty all the time instead.
So, please, before you judge someone with ADHD for something you don’t know a lot about, consider researching a little bit or asking that person if they can describe what’s happening inside their brain. We’re not lazy, just always looking for a normal dopamine level.
Giftedness + ADHD
From Rene Brooks <@blkgirllostkeys>, who has a website with great ADHD resources:Can we talk about the curse of being a “gifted" kid while having undiagnosed ADHD? Has anyone else survived this specially crafted hell?
Beyond the torment of ADHD symptoms, add the additional criticisms of “we know you’re smart” “you’re way too intelligent for this” and “why aren’t you working up to your full potential?” Then turn those internal and they are your internal diaglouge forever. So there’s your gift.
When I got to high school we changed school districts and they gave me the option to not be a gifted kid. And I took that option. I took that option like a shot. Unfortunately, they still discovered I was “capable of more” if I would “apply” myself.
Which brings the eternal “why won’t you try” chorus from your parents.
And you sit there in shame because you know you’re better than your performance too. But you don’t know why you can’t perform. So you just assume you’re awful and lazy and say goodbye to your self-esteem.
In elementary school the rule was that I had to sit on the couch until my homework was done. I would be on that couch for hours because I couldn’t pay attention long enough to just finish. As an adult I pointed out that they should have taken this plus the diagnosis seriously.
So TLDR I was tormented by my family about my performance in school but they knew I had ADHD and rejected the diagnosis but of course now that I’ve grown up and got myself treatment of course they can see the difference but I’m still kinda miffed about the whole thing.
Object permanence
Jesse J. Anderson <@jessejanderson> on ADHDers’ different relationship with object permanence and coping mechanisms for that:People with ADHD are often surrounded by piles of clutter. My desk is in a permanent state of chaos. Piles of books, papers, index cards, and random other things I don't want to forget.
Other ADHDers might keep a clean desk, but use their car as an extra closet and storage facility. Why is this so common for people with ADHD. It’s actually a form of self-preservation.
We often forget things we can't see. Instinctively, we know this.
When things are truly put away — hidden in the depths of a box or drawer — we know they disappear from our brains entirely.
This is why planners rarely work for people with ADHD. The second we close the cover, we forget everything inside. Without a routine in place, we might never remember to open it again.
When I was younger, sometimes my mom would be so fed up with my room she would clean it herself. I hated when she did this! “How will I ever find anything?!”
When things are “a mess”, they are out in the open and I can use them as a physical memory palace — the visual of their environmental placement reminds me where things are. It may look like a mess, but I can find exactly what I’m looking for.
This extends beyond just knick-knacks on a desk. Sometimes a work responsibility will fall out of your brain. You were doing it consistently and one day — for some unknown reason — you forgot to do it. It’s no longer part of your environment, your routine. When this happens, you know you’ll never remember this thing again until something specifically reminds you. As if it’s fallen into one of those boxes or drawers you never remember to open.
This can happen with people too. If you haven’t seen someone recently, you might forget they exist entirely. This can add a lot of stress to personal and family relationships. People are offended and fail to understand.
Not personality
Lauramkaye:it concerns me that people really don’t know that ADHD isn’t a personality type or behavioral problem.
ADHD isn’t someone who’s personality is driven by fun and disorder.
ADHD is someone who’s brain goes all over the place looking for dopamine, because it doesn’t make or register enough of it, and when it finds a source of dopamine, it hyperfixates on it. it’s about deregulation of attention as well as emotions.
it’s not a person who can’t behave. a person with ADHD can look like a lot of things. misconceptions about what adhd looks like kept me from even looking for a diagnosis, and it also kept myself and others (professionals, even) from taking my suspicions seriously.
Smart people can have ADHD. And a lot of the time, they compensate for the ADHD with intelligence- until they reach the point where they just can’t overcome it anymore, which is why a lot of gifted + ADHD people have good grades their whole lives and then “suddenly” crash and burn. For some it’s college, for some it’s grad school, for some it’s postgrad or professional exams like the bar. Whenever the things they have to do can no longer be brute-forced at the last minute.
ADHD is often lumped in with learning disabilities but it’s really a doing disability. We know what we should do. Probably we know six ways to do it. The trouble is actually getting our brains to activate so we can do it. Sometimes it’s like you’re being controlled by aliens or something because you say “I need to do X” and you’re going to do it and you just. Don’t.
Bad diagnostic instruments
Moon-faced Assassin of Joy <@NomeDaBarbarian> makes some implications about the mechanics of ADHD in the brain which are not quite accurate, but does it in a way that be a very useful corrective for folks who wonder if they have ADHD and have looked at formal diagnostic descriptions but not accounts of the experiences of ADHDers:I really don’t love how this test is worded, though, because everything’s from the perspective of a neurotypical baseline. “Overly” talkative? Compared to...? “You do X when it's inappropriate.” According to...?
It's phrasing like that which kept me from diagnosis for my entire life — phrasing that assumes a frame of reference I by definition cannot have. Which means I’m not supposed to notice my disorder. It's instead supposed to be reported on by people in my life.
ADHD, as described, isn’t ADHD as experienced. Instead, it’s just a list of the behaviors which piss off parents and teachers, which they want us to stop. And that’s kind of hot garbage.
Like, here are the diagnostic criteria for ADHD.
Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or with other activities.
Well … no. Obviously not. I pay very close attention to details, and by definition any mistake is a careless mistake. What, are people out here making careful mistakes? What I’m not paying close attention to is what you would like me to pay attention to. What you have failed to make interesting, since there’s so much that’s louder in the room.Often has trouble holding attention on tasks or play activities.
I can play Minecraft for nine hours straight and forget that my body exists. It’s not that I have trouble holding attention — it’s that I’m not in control of my attention. The tasks are, whatever they are.Often does not seem to listen when spoken to directly.
Literally nothing to do with my experience here. What if, instead, you ask “Do people have to say your name to get your attention, or to have to pull you out of your thoughts before they start talking to you?”Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g., loses focus, side-tracked).
Okay, that one seems fair enough. Would be great if it wasn’t also the one that was taken as a glaring personality flaw.Often has trouble organizing tasks and activities.
No, that’s hot garbage. I am excellent at organizing tasks and activities. Because my brain cannot do it automatically. So I have to consciously do it. But the DSM isn’t asking about that — it’s ignoring what the actually neurotically experience is, possibly because it’s not an experience they examine all that much.Often avoids, dislikes, or is reluctant to do tasks that require mental effort over a long period of time (such as schoolwork or homework).
Again, ridiculous. I can pour out mental effort like water for days at a time. What I can’t do is spend that energy on something that’s boring, that doesn’t hold my attention, or which has too many different steps. You want time to organize your file cabinet? Give me a podcast, it’s done.Often loses things necessary for tasks and activities (e.g. school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephone.)
Again, the only ones in relatable plain terms are the ones that get called personality flaws.Is often easily distracted.
No. If the thing I’m working on is interesting, I can’t be distracted.Is often forgetful in daily activities.
If I’m trying to self-report, how exactly would I know?Often fidgets with or taps hands or feet, or squirms in seat.
Or a thousand other coping mechanisms we use to stim, because you made it clear that what we were doing was inappropriate.Often leaves seat ins situations when remaining seated is expected.
Expected.Often runs about or claims in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).
“Appropriate.”Often unable to play or take part in leisure activities quietly.
When, precisely, was “quietly” a word used to describe the platonic ideal of children at play?Is often “on the go” acting as if “driven by a motor”
I sat and focused on books for ten hours straight, forgetting that meals or bathrooms existed. Is that on the go? It’s definitely the behavior you’re trying to ask about, but not what you’re actually asking.Often talks excessively.
“Excessively.” Anyone else follow the rules, raise your hand to answer questions, and eventually have teachers tell you to stop raising your hand. Hard to follow a rule you never make explicit, there, champ.Often blurts out an answer before a question has been completed.
Often has trouble waiting their turn.
Often interrupts or intrudes on others (e.g., butts into conversations or games)
All more or less the same thing — and none of those are what I experience.
What I experience is either:
-
The world seems so slow — people pause for so long, and you think they’re done talking. People use so many extra words. People don’t move efficiently! They don’t line up right! They’re all … just so slow, always!
or, - My brain has, without letting me know, already filled in the last words you were saying, thought of five questions in response to it, sorted those in order of importance, queued up one to ask, and made me start asking it.
And that’s it. This is quoting directly from the CDC, who are in turn quoting the DSM-V. It’s only different for adults in that they require fewer symptoms from each category to be present. Because you’ve probably built some coping mechanisms by then.
Centers For Disease Control and Prevention | Symptoms and Diagnosis of ADHD
The diagnostic criteria are criminally short, criminally flimsy, and based almost entirely on possibly misunderstood signs (as observed by other people) instead of lived experiences of symptoms (as observed by the person actually dealing with them).
This, to me, embodies a pattern seen in most of the poorly-described symptoms. It’s not “missing” details, it’s seeing to many of them and not being able to properly filter them. Just like the “deficit” of attention. There’s actually an excess, that just not regulated.
Emotions? Excess, unregulated. Energy? Enthusiasm? Thoughts? The entire existence is just. Excess, which leads to implosion and eventually appears to be a deficit
(Side note: gotta love how Twitter reinforces the tendency to jump into conversations with, well, too much.)
Perfectly said — so much of what is read by others as “deficit” is in fact “surplus” which we’re unable to regulated. I’m paying attention to everything, always, and I have no goddam choice in the matter.
It's that disconnect that makes me so thankful for #NeurodiverseSquad / #ADHDTwitter. If it weren’t for y’all, I’d never have recognized myself. The adults the world was apparently counting on to recognize it called me by turns “Lazy” or “Gifted.” “Talented” but “Unmotivated”.
It's why I try to pass that favor on, too, because fuck — It is so much better, knowing myself. With that in mind, here's what it feels like for me to live inside an #ADHD brain.
Lazy Perfectionist <@grumpyshrubbery> offers an observation not just about ADHD neurodivergence:
neurodivergents often feel the need to clarify things hours/days after they said it because we grew up being constantly misunderstood & getting in trouble for miswording or being too blunt & can’t stand the thought of people misunderstanding what we actually mean. we can often over-explain or ‘not let something go’ because we are so often misunderstood and want to eliminate any chance of that happening again. it’s frequently a trauma response stemming from chronic ridicule and punishment after being misinterpreted.@_wordsfromspace says:
First question in an ADHD assessment should be “so what exactly did it take for you to make to this appointment here today?” The discrepancy in sheer effort between my success and the assumed NT success is exhausting. (Same goes for my failures.)
Jesus Christ a thousand times this
“How long was it between you thinking you needed this appointment, and taking your first steps to make it?”
“What were your steps?”
Additionally, if you're part of Twitter (and even more so, part of TTRPG twitter), and find a lot of this ringing true ... I maybe have some extra news for you:
As someone with ADHD who’s Extremely Online™, Twitter is specifically like a drug for me. It specifically feeds my dopamine deficits. It occurs to me that a reason why so many folks #onhere find ADHD content relatable, Is that Twitter might artificially select for ADHD folks.
Just like how #ADHD folks are overrepresented in, say, Computer Science. Because it’s an environment that plays to our strengths and feeds our specific hungers. It’s a problem-solving, results-driven career where you don’t need to read social cues and are allowed to be weird.
So of course the social media site which ...
... is sifting the #ADHD folks outta the genpop.
- Requires short bursts of information
- Alerts us when a conversation is ongoing
- Gives us those good good dopamine hits with simple interactions
- Rapid-fires interesting things at us
You know how, when you see the solution to a problem, you immediately recognize it? You knew what shape it was going to be, so as soon as you have the solution idea, it just clicks? Y’all it just clicked for me. If I want to find #ADHD folks online, I’ll come to Twitter.
An update:
@q_aurelius says:I’ve had some folks defending the DSM and its definitions, or suggesting that I’m quoting it in a different way than it’s intended, or saying that psychologists/psychiatrists use other tools. I’d like to address that a bit.
The DSM is the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. It is the principal authority for psychiatric diagnoses, and the definitions it uses are often used to determine things like “will my insurance cover this?” It's a diagnostic manual.
To the folks saying that it has to rely on (external) signs instead of (internal or self-reported) symptoms, I don’t think that’s true. ADHD and OCD and SPD and ASD might all present with certain identical signs, rooted in very different symptoms. They may also be comorbid.
If the only diagnostic criteria are signs as noticed by parents and brought to a health care professional, then you are assuming
- Children's signs will be noticed by parents, who
- Recognize them as indicative of a disorder, instead of just calling the kid dumb/lazy/bad, and
- Have the resources to bring that child to a mental health provider, because
- There is a pediatric psychologist in their area who
- Will recognize the kid’s behaviors and
- Accurately diagnose the kid.
And y’all? I wish you could see my mentions.
Because that process does not work. It assumes that the kid won’t invent any coping or masking behaviors on their own: spoiler alert, most of us do. We’re problem solvers.
It assumes a stable household with parents who give a shit. It assumes doctors who won’t ignore or discount the kid’s behaviors. And even once you get past all of that, It assumes that the behaviors listed will match the ones in the DSM.
Given the likelihood of one or both parents of an undiagnosed ADHD child having undiagnosed ADHD themselves ... I don’t feel great about our chances of recognizing it in our children.
And — fuck, I didn’t even consider — given that this disorder has a documented genetic / inherited component, It assumes a likely undiagnosed parent will have the ability to navigate the multi-headed hydra of our medical system in the US to do so.
And it’s thought to evaporate in boys from the same generation as well, since at one point they’ll marry a woman who’ll take on the emotional work of [everything the ADHD brain is bad at]. Given that we're being raised by the generation where it was thought of as a disorder that only male children got, and grew out of? (Because, surprise, sexism?)
There isn’t a seperate DSM section for Adults. These are the criteria.
So.
We’re left with in all likelihood tens of millions of undiagnosed Americans,
Who almost certainly don’t have access to Mental Health Care,
Who have to first suspect something fixable is up with them.
Instead of just internalizing the voices of every authority figure in our lives, and deciding that we’re clearly just pieces of shit, full of wasted potential.
So, when we as adults finally decide, based on hearing something from someone about maybe this being something, to check The Book, You know, the one that’s available to us, the one that doesn't require us spending money we don’t have to go to a doctor? We get the DSM.
And we take one look at the diagnostic criteria, and go, “Well this clearly isn’t me.”
Or maybe we decide to do it right, and we got to a doctor we can’t afford, and they’re not a specialist in ADHD, so they also go to The Book, And ask us the questions out of it, And we say “No, that’s not me.” So they tell us we don't have ADHD.
We can’t go directly to the specialist after all, because we have to be referred to a specialist by our GP, and if they have something in their head like “ADHD doesn't happen in girls” or “ADHD goes away when you grow up” or — fuck — “You can't have ADHD if you did well in School.”
Then that care is walled off from us. And we’re already prone to think of ourselves as failures, somehow. So a doctor said, “No, you definitely don’t have it,” And what are we supposed to do, say we’re smarter than them?
Having diagnostic criteria that relied on the honest self-reported experience of the patient, as informed by the signs reported by others in their life, would save this trouble. Hell, even just phrasing the questions that way. “Have people said to you that you [x,y,z]?”
You know, since we have a disorder that’s often characterized by answering the exact question asked, without understanding the context of the question? By not understanding rhetorical questions to not be wanting an answer? You know, we natural and accidental pedants?
“Psychiatrists are using other tools than this.” Great. Good. Glad to hear it. I didn’t see a psychiatrist until I was thirty, and that was only after doing the groundwork myself. So unless you’re pushing for a system of universal mental health care, including screening?
Well, until that day, I stand the fuck by what I the fuck said.
ADHD as a cause of PTSD
A long thread from therapist Josh Weed arguing that common cultural responses to ADHD produce deep trauma:The level of trauma of being a neurodivergent person raised in an ableist world is absolutely underestimated. Many of the clients I encounter have levels of trauma that could qualify them for a diagnosis of PTSD.
We need to reframe this completely.
Part of the problem is that the way adults respond to symptoms of ADHD (and other neurodivergence) in kids they are in charge of is perceived by neurotypical people as “appropriate,” while being experienced in the mind and body of the kid with ADHD as physical or emotional abuse. And sometimes it actually is physical and emotional abuse. Sometimes it is an adult physically containing or even assaulting a child for out-of-control or boisterous behavior.
To many, this looks like “appropriate discipline.”
To the neurodivergent child, it is experienced as abuse, and to add confusion, this act that their body perceived as abuse is experienced often in a public setting where nobody intervenes, because the people around the situation are having a “that kid had it coming” type of sensation. So the ADHD kid believes they deserved it.
The emotional abuse component of this happens often in educational settings.
I myself was kept in for recess “for not finishing my worksheet” so often it became a natural component of my school experience. I was often the only kid kept inside.
Can you imagine how a child’s brain and body perceives events like that? To be the only one kept inside in order to finish a worksheet, and everyone else got it done easily, and it happens over and over, and the kid is told things like “you will go outside when you learn to prioritize your time better.” Only the kid never “learns” how to “prioritize time” better, and so it happens again and again and again.
Think of the inherent messages here. This very common intervention communicates several horrifying things to the ADHD student:
- Isolation communicates unworthiness and badness to humans. So the child perceives themselves as “bad”.
- The child perceives themselves as having no willpower, or less willpower than peers. “Everyone else got it done! Why didn’t you?”
- The child perceives themselves as less intelligent than their peers, even when standardized tests indicate otherwise. (When I was accepted into a “gifted” program after 6th grade — after being kicked out in 1st grade, btw — I had difficulty even believing the test was correct. I thought there had been a mistake.) /9
- The child perceives that they just don’t care about important things.
- When it happens over and over, they start to believe that they just like being “bad”.
- The child believes they must be lazy.
- The child starts to believe they don’t deserve to be treated the same way their peers are treated. They believe they don’t deserve recess, or the candy the other kids “earned”, or whatever other reward or good thing they miss out on because ADHD prevents them from finishing tasks in the same way as their peers.
Now imagine this as this plays out over time. Imagine this happening all year one year, and then it happening again the next year. Imagine this child being called out and embarrassed over and over, in front of their peers, for not having homework done or for moving too much or or for talking to a friend or for not hearing the question the teacher asked or for forgetting to get the permission slip signed.
All of those things are literal textbook examples of ADHD. But imagine how it is perceived when framed in this context.
Imagine a kid not being allowed to go on a field trip they’d looked forward to all year, or to a read-a-thon or to a class party they had genuinely tried as hard as they could to earn their spot in because they didn’t “get done” that which their brain disallowed.
Imagine a kid trying so, so hard to get their school report done on time because they really like their teacher, so even though it’s extremely hard, they muster the focus required to finish by staying up really late the night before. Imagine how thrilled they feel as they proudly and confidently walk into class knowing they had finally done something right, and it had finally worked. And then imagine their utter horror when, as everyone starts passing in their work, they open their bag and their stomach drops. They left it at home. It is not clear where it is because they remember taking it from the printer. They look in their bag one last time to see if it’s there. It’s not. They have no idea where it is. (Later they learn they left it on the kitchen counter as they grabbed their lunch.)
Imagine how utterly defeated they feel when their teacher calls their name and says, “Did you remember?” How absolutely desperate they feel inside as they start to to explain that they really did it but they don’t know where it is… they just can’t find it somehow…
And their teacher says gets angry and says “Stop. Just stop. I’m so tired of your excuses. Automatic zero. I will not accept another late project from you. I’ve given you enough chances.”
Imagine the horror. The deflation. The way their whole body would be filled with desperation, with fight or flight chemicals, with horror, with defeat.
This, my friends, is Trauma with a capital T.
And imagine this kind of thing happening over and over and over.
What do you think the mind and body does in this environment?
Naturally, understandably, it starts to treat moments like this the way the mind and body treats any trauma. The kid will learn to dissociate. To leave the horror of that moment. To escape the overwhelming discomfort. The body/mind will protect itself in the same ways any trauma victim would: shutting down, closing off, going inward, developing a heightened fawn response to appease abusers, high startle reflex, constant hyper-arousal and perpetual state of fight or flight. Essentially — the same cluster that can be described as PTSD.
Only these individuals have no idea their bodies are exhibiting PTSD-like symptoms. They often don’t even realize they are trauma victims.
They have all the symptoms: depression, nightmares, trigger responses, etc but because of how it was all framed, they think they are the problem. They think they are the fuck-up. All of the PTSD and trauma symptoms end up getting wrapped up into the same ball of perceived failure that their ADHD symptoms got lumped into. They are unable to function, to work, to thrive, to maintain relationships.
And the thing they have learned in our ableist society over and over is that it is their fault. They are bad. They don’t like to do the right thing so they are lazy. They are dumb. They don’t deserve the same good things as their peers. All the garbage they understood about themselves as kids continues into adulthood, and the trauma symptoms serve just as more evidence of why they deserve to suffer.
And everyone around them is so confused. Why can’t you just get your act together? You’re such a great person in so many ways…
But what nobody in the situation is seeing is that these are extreme trauma victims. That the way out of the nightmare is to focus on unpacking that trauma, and on teaching their body how to get out of that perpetual state of fight or flight by learning to believe that they do deserve good things and are worthy of success and do have every right to be able to feel safe in their own bodies, and that this was never their fault. It is something that happened to them, not something they did themselves.
Okay, a smattering of other thoughts then I have to start a session. First, a book that I have seen people get some mileage out of in helping with this particular trauma situation is Nicole LePera’s How To Do The Work. It isn’t perfectly tailored to this exact trauma but there isn’t much out there, and so the way it approaches trauma as a result from just the way childhood happens in our society helps, and the focus on ways to go from fight/flight to self soothing can be useful. Also her model for building self trust is feasible even for those with ADHD.
The thing that seems to help, though, is the process of re-categorizing all of these kinds of events as trauma instead of as failure. Each perceived “failure” is actually a legitimate traumatic event and should be looked at as such in order to heal.
Viewing ADHD diagnosis as likely to have a trauma comorbidity is important. I think it is something that might require massive research that as far as I can tell, isn’t being considered. While there seems to be tons of data on how trauma might cause ADHD, I can find nobody looking at how ADHD, over a lifetime, can cause complex trauma. (This doesn’t mean it’s not there — I just haven’t encountered it.) I think this is a huge oversight.
I think it is perplexing that data indicates that there is correlation between ADHD and trauma and for some reason nobody is being able to imagine that the ADHD is the cause of the trauma.
It feels so fucking obvious to me.
But it wasn’t always so.
Just like most other people with ADHD I felt like I was the common denominator underneath my many failures instead of failure in a society that expects me to be neurotypical being the common denominator underneath my trauma symptoms. In fact, it wasn’t until I largely resolved the other major trauma of my life — being a gay kid raised in a homophobic society/family/religion — that I even noticed ADHD as a trauma at all.
On a fundamental, in-the-moment fashion I was still experiencing trauma symptoms. And finally it dawned on me: ADHD had fucked me up on a specific, moment-by-moment trauma level in a way that was way more intense than being a gay Mormon kid raised in Salt Lake City, Utah.
Like, can you even imagine? That shit was traumatic.
The trauma of being raised as a gay kid in a homophobic society (which was very traumatic) doesn’t hold a candle — on a moment-to-moment, fuck-with-my-day level—to having been raised as an ADHD kid in an ableist society. There is no comparison.
Do with that what you will.
A metaphor for late diagnosis
TikTok video transcript:Why are you so bitter about late diagnosis? I mean, you still seem to be successful.
Imagine for a moment that you drive a crappy 1989 Chevette. Stickshift. And every time you get in your car, it is guaranteed that at least two things will go wrong. Sometimes you get off easy and it’s just that your window won’t go down or the trunk won’t close. But sometimes it’s a flat tire, and a transmission leak.
After a few years of this, you start carrying a full collection of tools in your car every time you leave.
But over the years you’ve gotten a reputation for being late and irresponsible.
Now after 30 years you become an expert. You could rebuild that car from nothing. Does that mean that when your axle breaks in half you’re not gonna be late to work? No! You’re still going to be late to work. But less of those things are going to happen, and you may not be as late as you would have been.
But as far as you know, everyone drives Chevettes because when you arrive late to work and you say “sorry, I had car troubles” people respond with “yeah, everybody has car troubles but everyone still manages to make it on time”.
So one day you pull aside your coworker and you say, “Hey, how come you’re never late to work and you never miss any deadlines?”
And they say, “I don’t know, I just do.”
And you say, “Well doesn’t your car always break down?”
“Well, yeah. We all have car troubles. But then we just get it fixed and move on. Don’t you have tools?”
“Yeah, I have tons of tools!”
“Well, maybe your tools just aren’t good enough.”
So you keep shopping around for new tools. And you’re like: I’m pretty sure I’ve tried all the tools. And I’ve tried them a lot.
Then one day you come across an article about Teslas, and you go and you test-drive a Tesla. And it runs like butter. Not only is it automatic, it’s self-driving. And if anything goes wrong, they bring you a new Tesla until yours is fixed. And you find out that all those people who had said that everyone has car problems had been driving Teslas this whole time.
You could have had a Tesla for 30 years that you were repairing that broken-down Chevette, if someone had just said to you, “Why do you drive a Chevette? You should drive a Tesla.”
So. Yes, I’m fairly functioning. Yes, I’m fairly successful. But look at how much work it took to get here. How much more successful could I have been if I had put in that amount of effort with a Tesla.
Here’s the hardest part: I was lucky enough to come from a family who became experts at repairing Chevettes. Imagine not having that, and your only coping mechanism was to just go to the repairman every time, and you rack up way more debt than you can handle. Or you just keep trying to fix it because you can’t afford a mechanic. And life gets so difficult that you turn to drugs, or you just take your own life. Simply because no one told you that you’re driving a Chevette and you could be driving a Tesla.
So yeah, I’m bitter. Because I’ve lost friends to that. And as long as I’m here on Earth I’m gonna get as many people in Teslas as I can.
The shock of late diagnosis
Another meditation on late diagnosis:serosfan
So I’ve just started taking ADHD meds to help and even on a low dose right now things are a lot better. So I have something to say.
ALL THIS TIME TASKS WERE EASY FOR NEUROTYPICALS?! I’m sorry?! I spend all the time feeling INFERIOR and like absolute garbage because people could do tasks better than me and it turns out its because for them it’s EASY?!
WHAT THE FUCK?!
roach-works
the most common and least mentioned side effect of being properly medicated is OUTRAGE
Writer Saladin Ahmed has another word about getting a late diagnosis.
As I sat listening to medical professionals explain to me what's been going on with my brain all this years it was both profoundly enlightening and devastating. The shrink used the phrase “off the charts” to describe my symptoms. He sort of just sat there wonderingly. “It’s amazing you’ve been able to do as much as you have.” “You’ve been cooking your whole life with half your burners out.” “You’ve been trying to drive on the freeway in a car that only goes 20mph.”
Each bit of truth hit me like a bullet. I’ve basically spent 30 years convincing myself that life is irrevocably and inevitably a brutal grind every day. To hear that there’s a very specific reason one feels that way -- a reason that can be helped some with medicine -- well, that’s some hard shit to hear. A thunderous voice starts booming at you about all the lives you could have led had you known this earlier. About all the years you’ve lost forever.
On habits
@NomeDeBarbarian again:Thinking about how I’ve been lied to as an ADHD person about what habits are. Habits, for me, are things that I can reliably remember to do. I have a procedure, I go through it, I’m familiar with every step. That is apparently not what neurotypical folks get to experience.
Habits are things that they do without thinking. They don’t have to decide to do them. They don’t have to remember to do them. Things just happen, automatically, because they’ve done them enough for that system to engage and make them automatic. That system... which I lack.
Every single time I have brushed my teeth, it’s been an active choice. I’ve had to devote thought and attention to it. It’s not a routine, it’s not a habit, it’s something that I know is good to do, and hopefully I can remember to do it. Every single time I exercise, or floss, or pay my rent, or drink water, or say “bless you” when someone sneezes, it’s because I’ve had to actively and consciously engage the protocol.
It never gets easier. Just more familiar.
It’s part of my struggle with my weight - exercise never becomes a habit, and every single time I do it, it is exactly as hard as the first time. It takes exactly as much willpower & thought. I got lied to about how it would just “turn into a habit.” And blamed, when it didn’t.
If there’s not an external motivator (My cat yelling at me, so I feed her. I need clothes for work, so I do laundry. Etc.) I’m just constantly trying to remember all of the various procedures I have.
Add to that the way ADHD fucks with my interoception? Interoception is your ability to perceive your body’s signals. And I just... can’t. I don’t hear them, until they become emergencies. Everything else is so much louder. Every time I realize I need to pee, or poop - every time I feel hungry, or thirsty?
It’s an emergency. Now.
Drinking water isn’t a habit. Feeding myself isn’t a habit. Bathing isn’t a habit. I spend so much more energy, so much more time, so much more labor on just managing to maintain my fucking meat suit. And now you want me to also do taxes? On time?
Sounds homophobic, tbh.
Hey turns out there’s a pill which can help me maintain habits. If I can remember to take it. Which would be useful. If only I could make taking the “habit-making” pill a habit.
I need to date someone with (or join a polycule where at least one person has) executive function and time management skills. Like, I will cook every meal, scrub every toilet, do all the grocery shopping, fine - I just need someone else’s chore to be “remember time exists.” A chore wheel for the house, where one slice is just “Prompting.”
<@AMP2>:
I will do half to two thirds of the chores/cooking/errands in exchange for good time management delivered in a sensitive manner!
In a heartbeat. “Hey babe, I’m going to iron. Come fold the laundry and keep me company?”
<@RohannenZorbia>:
Sounds like someone needs to invent some kind of roomba that follows you around and gently reminds you about things. Maybe they could make it so it’s like a robot parrot on your shoulder or something like that.
Do you remember in Flubber, where Robin Williams has the secretary robot that floats around behind him? That is the dream.
One of the things that was a huge realization for me was when someone explained why ADHD was thought of as a boy’s disorder that you grow out of - Because the men would be assumed to have both a wife and a secretary, onto whom they would offload everything ADHD is bad at. So suddenly the symptoms “disappear.”
<@tintabula>:
And as a girl in the dark ages, I couldn’t have it. I was just defiant and obtuse.
Yup. According to the era, if you’re a woman with ADHD? No you’re not - you’re just bad at being a wife and mother, and need to try harder. Excuse me while I throw up in my mouth a bit.
Mary <@lyrytish>:
As that person 21 years into a relationship...it sucks to be us but it is truly the expression of love and respect. “Babe, don’t forget” for the 20th time in 3 hours is really hard to keep tender
It’s a part of the division of labor in a relationship, and a huge one. Without talking too much about our business, it’s part of why my last relationship failed. I needed to be prompted, or to make plans /with/ someone to face tasks together. She needed routines, that she explicitly didn’t want to think or talk about. She needed “say it once, and then it’s handled forever.” And she wasn’t able to do the things I was begging for - things like saying, “hey, let’s do [x],” or tempering her language/tone when saying “have you done [y]?” And all of the tools we had built over the years - her, being undiagnosed ASD, me, being undiagnosed ADHD - went right past each other, because they were made for interacting with neurotypical folks.
So we just... never worked. Never managed to bridge the gap.
The worst part? I knew all of this going in. I talked to her about what I was hoping for, what I needed. Was super explicit and clear about my feelings. But she’s been lied to by neurotypicals her entire life about their feelings, so she doesn’t listen, and instead observes. So she nodded, and made the noises people make, and waited for me to instead show her what I was like by how I acted, because years of neurotypical bullshit had taught her that nobody is clearly communicating about their emotions. So she waited for me to do something other than tell her. Which was, in fact, the only tool I had.
So it was just... almost four years of stalemate. During that time, I also felt diminished. Less myself than normal - because when I’m around people, one of the things I’m looking for is for them to work my levers. I can’t reach them.
I’m like a wind-up toy - someone or something else has to twist the key. I’m capable of so much if I’m in relationships or community with the right people, with people who understand me and my strengths and my needs. I can guide, but I can’t operate me. I can’t reach the lever.
Sid <@velocirker>:
Reading this thread reminded me of a meme my friend made because being ADHD and Autistic is ✨fun.✨
It really makes me wonder how y’all ADHD + Autism folks do it. I have all of the “I need prompting, and get dragged off-course by novelty,” and she had all of the “There is a correct way for the spices to be in the cabinet, no I can’t explain it.”
Cultural politics & philosophy
A thread by Pete Wolfendale:p. e. moskowitz tweets:
the inevitable end of diagnosis culture is completely removing agency from people — complete infantilization so that none of us have free will. what an attractive concept for people who wish to remove themselves from the complicated truth of what it means to live a life!
Okay, it’s overly serious answer time. Yes, diagnosis culture can be cringe. But I’d argue that a certain amount of cringe is an inevitable consequence of what is a broadly positive development. One that should be mitigated, yes, but not simply dismissed.
As I’ve pointed out before, as soon as we acquire new vocabulary, and with it new genres of reasons, both for explaining the world and justifying our actions in it, we inevitably create new ways of dodging our responsibilities:
I think people tend not to appreciate that when we establish new genres of reasons, e.g., innovations in anti-oppression discourse, we thereby create new opportunities for rationalisation. Misuse and misapplication should be priced in, rather than seen as exceptional.
It should be no surprise that this is dynamic is particularly pronounced when it comes to neurodiversity and the burgeoning discourse of executive dysfunction. This is precisely where questions of explanation and justification meet: on the neural terrain where reason is realised.
But I’d suggest we should treat this discourse with special care for precisely this reason. The most common accusations levelled against those experiencing executive dysfunction of various sorts are precisely that they are rationalising their behaviour.
Cards on the table: at least once a year, every year, for the last decade, my brain has crashed to an extent that completely disrupts my ability to maintain my extant commitments. I have little choice but to accept that I’m congenitally unreliable, and plan accordingly.
I cannot explain how much I fucking hate this. I take responsibilities very seriously. I used to take great pride in being reliable. But bipolar disorder simply does not care about my wishes on the matter. I am flaky in ways that I absolutely positively detest.
The single worst interaction I’ve had with a mental health professional was with a therapist who very pointedly asked me: "Why is it so important to you to identify as bipolar?" I’ll admit to seeing red for moment, before very gently trying to dismantle that particular trap.
I understand very well where this question came from: a concern that over-easy identification with a diagnostic category might hamstring my ability to overcome personal problems, treating surmountable psychological issues as innate neurological obstacles.
This didn’t stop me wanting to tell her to go fuck herself.
To insult her and her professional a little more articulately, there’s a marked tendency for purveyors of talk therapies to explain things in intentional terms. To a man with a hammer, etc. etc. The idea that neurology resists such descriptions is often approached with hostility.
Learning that I can, in fact, become depressed for no psychologically salient reason, and that such depression is not best explained as a ‘mood’, but as a sort of systemic cognitive dysfunction that takes motivation, concentration, and memory with it, was extremely liberating.
Of course, this can make me complacent. It can cause me to ignore aspects of my psychological well-being that are not usefully reduced to the neurological. It can stop me from doing the difficult work of figuring out what is making me sad, avoidant, or frustrated.
But the alternative extreme is ripping myself to pieces looking for things that are not there. Not all executive dysfunction is amenable to (folk-)psychological methods intended to pick apart rationalisations and cultivate personal responsibility. Treating it that way does harm.
(If you’re interested in my experience of bipolar disorder, I’ve written two long rambling philosophical pieces that touch on it:
But I’ll leave it there for now.)To make a more general point, executive dysfunction comes in a variety of forms, not all of which are usefully assimilable to those examples of akrasia (‘weakness of the will’) most familiar from the philosophy of action (quoting myself):
I mean, every philosopher is taught the problem of akrasia as an initial provocation: why do our behaviours and our beliefs fail to align in such strange ways? But this gets treated as a singular locus of executive dysfunction, divorced from related issues such as anxiety.
There’s still a notably Socratic tendency to collapse differences between these dystunctions by focusing on the ‘knowing what we should do’ rather than the ‘not being able to carry it out’, as if the problem were really getting people to know in the right way.
But the motivational difficulties experienced by a depressive in an anhedonic state, an ADHD person struggling with an extended task, and an OCD person fighting a compulsion are quite distinctive, even when their grasp of their objectives are very similar.
Obviously, this is why we end up with a range of different diagnostic categories, but it shouldn’t surprise us that these end up shading into many peoples’ everyday experiences of sub-clinical dysfunction. Neurodiversity is not confined to the clinic.
The question remains: is there more bad than good in this terminological overspill? Does letting people say, to take an example I read recently, that they’ve got "a little bit of the ’tism", cause more trouble than it’s worth?
I don’t want to be dogmatic here. I do think that there are examples of the reason to rationalisation pipeline that vitiate the relevant linguistic innovations. To take the obvious psychological example: the language of ’trauma’ seems almost terminally overextended at this point.
It’s worth recalling the ‘trigger warning wars’ that raged from academia, to the internet, to mainstream culture a few years ago. In retrospect, it’s pretty clear both that trigger warnings were useful for those with PTSD and that they got entangled with identitarian trends in unhelpful ways.
To be clear, I mean the ways in which specific sorts of trauma and trauma responses became seen as validators of identity positions, or even sources of insight, encouraging some to imitate and even cultivate heightened sensitivities as a way of authenticating themselves.
It’s easy to see this as a sort of psychic harm. The misapplication of categories meant to improve self-understanding and thereby personal autonomy in a way that actually impedes both.
This is to be contrasted to the social harm perpetrated on those with genuine PTSD, as the word ‘trigger’ slid from a useful technical term to something one does to ‘own the libs’. That’s a little hyperbolic, but I’m sure you see my meaning.
This is a useful model for the ills of ‘diagnostic culture’: does the appropriation of clinical categories by a wider range of people under the banner of ’neurodiversity’ cause significant psychic harm to those without, or social harm to those with clinical diagnoses?
Let’s take the question of social harm first. I’d like to take an analogy that has nothing to do with mental health, because I think it’s usefully instructive: the rapid growth in people self-classifying as gluten intolerant to some degree.
I pick this because there’s plenty of cringe to be had here. There are undoubtedly a lot of people who identify as gluten intolerant, or simply exclude gluten from their diets, for no good reason. There are whole genres of jokes and memes dedicated to this.
I’m sure coeliacs have their own harsh words to say about such people, but at the same time, I think it’s fairly safe to say that the expansion of gluten intolerance has, modulo some confusions, increased options available to coeliacs. There’s a gluten free bakery near me now.
I think I can speak for people with bipolar disorder or MDD when I say that increasing awareness of common depression in popular culture is on balance good for us, even though it occasionally disguises what is so harrowing about the variants we experience.
I’ll leave each to judge their own, but I suspect when it comes to the language of executive dysfunction and the various form it takes, increasing use (which always comes with misuse) has been a net positive. Those who need it get more leeway, even if some who don’t do too.
What about psychic harm then? This is where we started: the worry that diagnostic culture is infantilising people by encouraging them to discount their own agency. I want to approach this with a more controversial analogy, again chosen for the purposes of cringe: neo-pronouns.
I love reading sci-fi in which gender gets played around with, but even if I can happily read a story peppered with ‘xe’ and ‘xyr’, I have to admit I find neo-pronouns cringe. Xenogenders border on uncomfortable fictionalisation of the self, not entirely unlike otherkin.
There’s a serious discussion to be had here about the role such practices play in self-realisation, and the extent to which they articulate prototype forms of personal autonomy. For me, the cringe can probably be parsed as ‘this feels unworkable’.
But I honestly believe this doesn’t mean a lot. My instinctive feelings about whether some social innovation is workable or not really aren’t that important. Every innovation looks weird and janky to begin with. Each that succeeds does so by failing and evolving in the process.
I believe this is the proper way to think about the evolving discourse of neurodiversity, as it awkwardly adopts and adapts diagnostic language: we are watching new ways of cultivating agency trying to be born, new types of dysfunction/optimisation, new genres of personhood.
A lot of this is going to suck, likely for quite a while. It’s not clear when or if any given tendency will converge on stable norms. It’s not clear if there are good neural correlates to peg these norms to. But they’re clearly evolving as they expand, maybe for the good.
So to all you ADHD headed hipsters, you autistic sisters and misters, schizoid whisperers, manic depressive drifters, and assorted neurotypical grifters, wherever you may be in the neurological space, I bid you good night and smooth execution.🖖
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