Lynette Bye

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What is ADHD?

I recently wrote a post about ADHD, and I got some (fair) pushback that the experiences I’m describing happen to most people, not just people with ADHD. If everyone has trouble focusing sometimes, what does it mean to “have” ADHD? How do we draw that boundary?

Honestly, it’s complicated.

ADHD isn’t a disease, like a coronavirus or malaria. We don’t know of a clear underlying medical cause for the symptoms of ADHD. No doctor can look at a brain scan or blood test and say “Yes, you have ADHD!”

We know that it’s partly inheritable and that dopamine and norepinephrine deficits seem to be involved. ADHD stimulants increase these chemicals, which impact executive function, motivation, and reward perception – basically everything you think of as “self-control.” (See an easy introduction video to dopamine here.)

Instead, ADHD is the label given to a cluster of symptoms around difficulty managing attention, impulsivity, and hyperactivity. A scale like the Adult ASRS Scale is often used to measure these symptoms.

I find this frustrating. “When you have a task that requires a lot of thought, how often do you avoid or delay getting started?” is so unhelpfully vague that I want to scream.

Should I say “often” if I answer emails for an hour before getting started on work once a week? What if I procrastinate on starting work for a couple of hours on the majority of days? Or should it only be if I procrastinate for days, and get nothing done in the meantime? These three scenarios have wildly different consequences for my ability to function, but the questions don’t give you any baseline to compare yourself against![1]

One person told me that they’d looked at an ADHD quiz several years before getting diagnosed officially:

“I did the 6-question assessor and was like ‘trouble paying attention? Nah, not more than anyone else!’ I typical-mind-fallacied my way right out of a diagnosis.”[2]

This wasn’t an isolated experience; over half of the people I interviewed expressed uncertainty about their diagnosis. Did they “really” have ADHD? Which symptoms were due to ADHD, and which to just being unmotivated or their personality?

I would love a scale that could tell me that “50% of people procrastinate getting started for X-minutes a day on average, whereas the best 10% only procrastinate for Y-minutes and the worst 10% procrastinate for Z-minutes.” You could check your day against the scale and have a good idea where you fall.

That scale doesn’t exist.

As a result, ADHD diagnoses are arbitrary.

Everyone experiences some degree of ADHD symptoms. If your experiences pass some arbitrary threshold of severity according to the particular doctor you’re talking to, then you get diagnosed with ADHD.

According to psychiatrist Scott Alexander:

“Ability to concentrate” is a normally distributed trait, like IQ. We draw a line at some point on the far left of the bell curve and tell the people on the far side that they’ve “got” “the disease” of “ADHD”.

The prevalence of diagnosed ADHD is about 10%, so doctors are essentially cordoning off the worst 10% of the population on this bell curve.[3] 

So to all the people commenting on my ADHD post that “Everyone experiences those symptoms. It doesn’t mean I have ADHD!” …You’re sort of right?

We should expect most people to occasionally experience symptoms of ADHD. If we could magically line up everyone based on how severely ADHD symptoms impacted their life, we’d see the burden from symptoms gradually increasing as we went down the line.

At one end of the line, we’d see people who were barely impacted by ADHD symptoms at all. At some point, we’d start seeing people who are doing fine but could accomplish more if they had stimulants. Further down the line, we’d find people who are struggling every day but can still hold down a job. Eventually we’d reach people who’ve lost multiple jobs or relationships.

Where on this line do we start giving people stimulants? 

If different brains make different amounts of dopamine (or whatever the magic chemical is), then it’s not surprising that lots of people who make enough to function normally still sometimes benefit from a bit extra. I don’t know if 20% or 50% or 70% of people would benefit, but I would strongly guess that it’s more than 10%.

Unfortunately, the medical establishment treats stimulants as a medicine to treat a specific disease – a medicine which they strictly gatekeep. The medical establishment says that finding ADHD medication helpful doesn’t confirm that you have ADHD (and thus should be allowed stimulants), since most people benefit from ADHD medication whether or not they meet the criteria for diagnosis.[4]

Instead, doctors want to track the presence of symptoms from childhood to the present day, and check that you say “often” or “very often” sufficiently frequently to questions like “How often do you have difficulty keeping your attention when you are doing boring or repetitive work?”[5]

But now we’re back to arbitrary, hackable questions gatekeeping a drug that’s helpful to a potentially large fraction of the population. People who are genuinely trying to figure out if they “really” have ADHD aren’t able to do so from these questions.

People who’ve given up on that can just say “often” or “very often” to all the questions, and get meds.

Seriously.

Psychiatrist Scott Alexander wrote:

“If by some chance a psychiatrist doesn’t give a patient Adderall, that patient practically always goes to another psychiatrist, and that next psychiatrist does. Trust me, no matter how unsuitable a candidate you are, no matter how bad a liar you are, somewhere there is a psychiatrist who will give you Adderall. And by “somewhere”, I mean it will take you three tries, tops.”

Makes one feel rather cynical about the world, doesn’t it?

Personally, I care if people are accessing medication that helps them function better. I wish we didn't have any of the gatekeeping or labels or screening tests except insofar as we used it to predict who would benefit from meds.

My ideal solution would be for everyone to try stimulants, see if they notice a difference, and then take them if it makes their life better (and for all of this to be completely legal).

Of course, we’d inform people about the possible side effects like irritability, insomnia, fast heart rate, and high blood pressure – then we’d let them decide for themselves if the benefit was worth the side effects.

I’m also in a weird social bubble of unusually high conscientiousness and openness-to-experience[6] people where almost everyone will read at least Scott’s post about the risks of Adderall before trying drugs, and almost no one would even consider taking 25 pills at once. This post is probably redundant for a quarter of that social bubble who have already investigated stimulants, but probably another quarter should check whether stimulants help them.

I know my vision is too optimistic (probably because of that weird social bubble), and we need some gatekeeping to avoid abuse. And obviously, doctors and society don’t quite agree. They have extra hoops you’ll need to jump through.

But if you’re a sensible person just trying to optimize your productivity, and you haven’t tried stimulants, maybe check you aren’t typical-mind-fallacying yourself out of a helpful tool?


Footnotes:

[1] Tip, the first answer probably doesn’t indicate ADHD. The second one is ambiguous but might, and the last answer sure sounds like ADHD.

[2] The typical mind fallacy is the mistake of assuming other people's experiences are similar to your own.

[3] This analysis and this analysis of US federal data found that 11% and 9.8% respectively of kids had been diagnosed with ADHD by a doctor. UpToDate, a well-trusted database of medical reviews for doctors, estimates that between 9 and 15 percent of school-aged children have ADHD. Meanwhile, this meta-analysis found that 6.7% of adults have ADHD, and UpToDate estimates 4.4%. 

[4] It seems to be a talking point on the internet that “ADHD meds don’t help if you don’t have ADHD,” but the limited studies we have on stimulant’s’ effects on non-ADHD populations don’t support this claim. This review focuses on the risks of misuse, but if you read the section “Effects of stimulants on cognition in individuals without ADHD,” all of the studies show neutral or positive effects, including on memorization tasks, working memory, cognitive control, and even creativity, though often with a smaller effect than for more impaired people.

[5] These doctors say it’s important that you had symptoms as a child, since current diagnostic criteria mostly say that you can’t develop ADHD as an adult. I’m confused by this, since there seems to be growing research that many people have ADHD as adults who didn’t have symptoms as kids. It’s possible that this will change in the future, similarly to how diagnostic criteria used to say you could not have both ADHD and autism, then changed when new research showed this was incorrect.

[6] Conscientiousness and openness to experience are two of the Big Five personality traits, and I expect being high on both to correlate with being cautious but willing to try potentially helpful medication.