14 August 2021

The subjective experience of ADHD

I have been watching ADHD Twitter for a while and have started capturing useful threads about the subjective experience of the condition here.





Moon-faced Assassin of Joy <@NomeDaBarbarian> wrote this, and while it does not really describe the mechanics of ADHD in the brain properly, for folks who wonder if they have ADHD who have looked at formal diagnostic descriptions but few accounts of the experiences of ADHDers, it can be a useful corrective.


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.

  1. 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.
  2. 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.
  3. 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?”
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Is often easily distracted.
    No. If the thing I’m working on is interesting, I can’t be distracted.
  9. Is often forgetful in daily activities.
    If I’m trying to self-report, how exactly would I know?
  10. 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.
  11. Often leaves seat ins situations when remaining seated is expected.
    Expected.
  12. Often runs about or claims in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).
    “Appropriate.”
  13. 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?
  14. 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.
  15. 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.
  16. Often blurts out an answer before a question has been completed.
  17. Often has trouble waiting their turn.
  18. 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:

  1. 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,
  2. 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).

@MeatyHD says:

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.

@_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 ...

  1. Requires short bursts of information
  2. Alerts us when a conversation is ongoing
  3. Gives us those good good dopamine hits with simple interactions
  4. Rapid-fires interesting things at us
... is sifting the #ADHD folks outta the genpop.

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:

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

  1. Children's signs will be noticed by parents, who
  2. Recognize them as indicative of a disorder, instead of just calling the kid dumb/lazy/bad, and
  3. Have the resources to bring that child to a mental health provider, because
  4. There is a pediatric psychologist in their area who
  5. Will recognize the kid’s behaviors and
  6. 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.

@q_aurelius says:

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.





Another thread about the relation between the external and subjective experience of ADHD, this time 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.





Another thread, this time 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.