I am not a doctor and this does not constitute medical advice. Consult your physician before making any decision that could affect your health.
I was diagnosed with ADHD this year. Frankly, the diagnosis blindsided me. On the advice of my therapist I had gone in to get tested for Autism Spectrum Disorder. We thought it might explain some of my difficulties in daily life and social interactions, and knowing about it would help me self-educate and thereby address it more effectively. I underwent a grueling regimen of neurological tests and questionnaires, and out the other end came a phone call and a written report officially diagnosing me with Attention-Deficit/Hyperactivity Disorder.
(My wife was not at all blindsided by this. When I first brought up ADHD with her, she said “oh yeah, you have that.”)
If you don’t have ADHD, you’ve likely picked up some household stereotypes of what it is and who suffers from it. The stereotype of ADHD is a young boy who can’t sit still and gets distracted by squirrels. None of this is strictly false: being unable to sit still and easily distracted by unimportant things are among the symptoms of ADHD, and it’s most commonly diagnosed in school-aged boys (while being underdiagnosed in girls). But like most stereotypes, this one obscures more than it reveals.
The “squirrel” joke is overplayed and considered offensive by many in the ADHD community.
Since my diagnosis I’ve been feverishly learning as much as I can about ADHD. I’ve got a lot of lost time to make up for. In this post I’d like to share some of the most surprising and important things I’ve learned, and hopefully help you form a more accurate idea of what ADHD is.
Some vocabulary before we start
- Neurodivergent (noun or adjective): Someone who has a neurological disorder such as autism, ADHD, OCD, or dyslexia. There is no standardized list of disorders considered neurodivergent, so this one is generally left up to self-identification. Often abbreviated as ND on social media.
“Neurodivergent” and “neurodiverse” are sometimes considered synonyms, but the neurodiversity movement is very controversial. When I say “neurodivergent,” I do not mean to associate myself with the baggage of neurodiversity; I simply mean “not neurotypical.”
- Neurotypical (noun or adjective): The opposite of neurodivergent. Someone who does not have a neurological disorder. Most people are neurotypical. Abbreviated as NT.
- ADD (noun): Attention-Deficit Disorder. A term no longer used since the DSM-IV was published in 1994. All attention-deficit disorders are now referred to as ADHD. The disorder formerly called ADD is now called “ADHD Inattentive Type” or “ADHD - Primarily Inattentive”. The other presentations of ADHD are called “ADHD Hyperactive Type” and “ADHD Combined Type,” the latter including symptoms of both hyperactivity and inattentiveness.
1 . “Attention-deficit” doesn’t begin to cover it
ADHD is the most poorly-named affliction ever. like hi do you have a profound physical inability to accomplish your goals specifically because they're your goals and also the thought of your friends not liking you makes you want to die? you may have Trouble Sitting Still Disorder— Ada Powers (@mspowahs) February 6, 2019
ADHD isn’t just distractibility or running around the classroom. It covers a spectrum of issues that are thought to be related to dopamine levels in the brain and the function of the prefrontal cortex. To better reflect these issues I’ll use an acronym, “FEED,” that explains the disorder more comprehensively.
FEED: Focus, Executive, and Emotional Dysregulation
1. Focus dysregulation
“Lack of attention” isn’t really the issue in ADHD. People with ADHD are paying attention. The problem is we’re paying attention to everything, all the time. Whatever you might be saying to us is competing for brainspace with a hundred other things: the pattern on your sweater, an itchy elbow, another conversation happening twelve feet away, the window, the sound of the ceiling fan, the flickering of a fluorescent light in our peripheral vision, the new Greek restaurant down the street, a joke we just thought up, a text we need to reply to, last night’s episode of The Simpsons, and so on. Some of these things are real and present, and others are only in our minds. All of them are receiving our attention. None of them are receiving our continual focus. We know we want to focus on what’s happening right in front of us. We’re trying. But we can’t. The brain simply will not comply. (It shouldn’t need to be said, but “trying” and “effort” and “discipline” are not the problem; brain function is.)
Except sometimes we can focus. This can be confusing to outsiders. ADHD brings with it something called hyperfocus: the ability to focus the sum total of one’s mental capacity on a single subject or task for hours (or even days) at a time. Outside of the ADHD community, this is often referred to as a “flow state” or being “zoned in” or “carried away.” However, it’s hard to compare the neurotypical experience of being caught up in something interesting to the ADHD experience of being hyperfocused. When we are hyperfocused, we can ignore food, sleep, other human beings, financial limits, and day-to-day responsibilities in the wake of our passion. Often we’ll lose all awareness of the passage of time. When we come back to reality, we may bring with us a surprising depth of knowledge about the subject in question, or we may have completed a superhuman amount of work. But once the hyperfocus is gone, it’s often gone for good—more on that later.
So what’s the difference between the things we’re unable to focus on and the things we will chase with our whole entire brains? That’s beyond my expertise, but the what’s essential to know is that it’s not usually voluntary. For things that I have a lifelong passion (a “fixation”) for, such as software development, I may find myself in a hyperfocused state a few times a month or even more often, most often when starting a new project or doing something I feel particularly competent at. But aside from that, I do not know what my next hyperfocus will be. Over the past few years I have hyperfocused on electronic music production, Dungeons & Dragons, parasitic wasps, virtual reality, kettlebell training, longboarding, novel-writing, parenting books, learning Chinese, jogging, several software projects, and of course ADHD. (This is not a complete list.) Right now I am hyperfocused on this blog post. My hyperfocus generally lasts anywhere from a few hours to a few weeks, although I try to avoid “disappearing off the face of the earth” for the duration, since I have a job and a family. But once the hyperfocus is over, I may never come back to that particular thing again. The artifacts of my obsession will likely gather dust in the basement until I convince myself to throw them away.
For this reason, another one of my favorite names for ADHD is “I’ve Been Meaning To” Disorder. I’ve been meaning to start learning Chinese again. I’ve been meaning to go running. I’ve been meaning to work on my novel. And from the Executive Dysregulation department (below): I’ve been meaning to do the dishes, and change my bedsheets, and get an oil change…
Video games are famously easy for people with ADHD to focus on (or get addicted to). Many experts consider this another example of hyperfocus, and it certainly manifests the same way. However, I’m reluctant to include video games in my personal definition of hyperfocus because I believe their effect has more to do with the way they’re designed than the unique quirks of ADHD brains. Video games are perfectly attuned to the needs of any person who’s easily bored. They require constant interaction; they provide near-constant positive feedback and a sense of achievement; they stoke our curiosity and need for structure; they are often bright and colorful and novel in a way that real life isn’t. Video games are not an arbitrary subject of immense focus and adoration; they’re a purpose-built honey trap. So even if they are a hyperfocus, they don’t demonstrate the phenomenon as well as other things.
Don’t get me wrong, I’m not morally opposed to video games. They’re delightful. But it should be said that the “feedback/engagement loop” relied on by video game producers is essentially a dopamine manufacturing cycle, which is catnip for ADHD brains. Some of us are particularly vulnerable to an unhealthy dependence on video games and we shouldn’t ignore that.
tl;dr the Attention aspect of ADHD cannot merely be described as a deficit. It is instead a dysregulation: sometimes too little, sometimes too much, often to the wrong things, with a scarce or nonexistent ability to control which of the above happens and when.
2. Executive dysregulation
“Executive” here refers to the executive functions, an organizing principle of the human brain. Executive functions are best defined by example. Some of them are:
- Working memory: the ability to hold several things in your mind at once, reason about them, and remember them. It may sound complicated but in fact you do it so often you probably take it for granted. When you read, your working memory is in charge of turning words into ideas and then fitting them all together so you can understand sentences and paragraphs. When you have a conversation, your working memory chooses the important things each person is saying and puts them in long-term memory. When you cook, your working memory keeps track of which steps you’ve already followed, which ingredients need to be added next, and which things you need to check on so they don’t burn. People with ADHD may have constant or intermittent problems with reading comprehension, memory, following instructions, multitasking, staying on task, and other essential skills.
- Time management: the ability to estimate how long something will take or how much time has passed and make decisions accordingly. People with ADHD may suffer from “time blindness,” a lack of any innate sense of time. This can make it difficult to show up on time, plan out your day, meet deadlines, pay bills on time, limit activities to an appropriate time frame, and keep promises.
- Impulse control: the ability to assess one’s impulses and choose whether to follow or discard them. People with ADHD may be impulsive spenders or eaters and struggle with social inhibition, often blurting out things we shouldn’t. Poor impulse control may also play into the ADHD tendency to fidget, although for many of us fidgeting is a crucial skill and part of daily life, providing necessary mental stimulation so we can think straight.
- Self-motivation: the ability to do things that are not immediately rewarding or enjoyable. People with ADHD are sometimes unable to do things on the promise of a delayed or moral reward, like cleaning house, doing dishes and laundry, studying, or even getting up in the morning. We often compensate with intense anxiety and frenetic productivity in the eleventh hour, finishing a task only when faced with a tight deadline or the prospect of disappointing someone.
- Cognitive flexibility: the ability to switch between tasks and adapt to change. People with ADHD may need extra time and effort to shift focus from one thing to another—for example, getting back to work after a bathroom break or moving from task to task on a to-do list. We may also struggle when plans or routines change, even in trivial ways. We may become anxious, irritable or apathetic when things don’t go the way we expect.
Every person with ADHD has their own mix-and-match combination of executive dysfunctions. As with attention, these are generally dysregulations rather than deficits: depending on the brain’s cocktail of neurotransmitters on any given day, the amount of dysfunction can vary significantly. And often our hardest struggles are hiding under the surface. By the time we reach adulthood we’ve usually developed compensatory strategies that hide these weaknesses from our peers. This doesn’t mean our ADHD is cured, any more than eyeglasses means a person’s vision is cured. The condition may still be deeply stressful and require daily effort to manage.
3. Emotional dysregulation
Emotional regulation is also considered an executive function, but I believe it’s an important enough aspect of ADHD to merit its own letter in the acronym.
Emotional dysregulation in ADHD manifests as a pattern of sudden and intense emotional reactions which, if acted out, often appear disproportionate or immature to others. The entire spectrum of human emotion is magnified: excitement, infatuation, disappointment, frustration, joy, fear, and so on. The experience of these emotions is often overwhelming, even for adults. It’s extremely difficult to mask these emotions and sometimes we fail in spite of our best efforts.
Of all the aspects of ADHD, this is the one that has caused me the most embarrassment. It’s almost never the right time or place for an impromptu display of emotion. But over time I’ve learned a lot of self-restraint, and in everyday life I’m lucky to be surrounded by people who are kind, understanding, and quick to accept apologies.
An unofficial but widely-accepted feature of ADHD is Rejection Sensitivity Dysphoria or RSD. Many people with ADHD consider it to be their most difficult symptom. RSD is extreme sensitivity to the experience or even just the idea of embarrassment, rejection and criticism. People with RSD may obsess over worries that they are unlovable, unlikeable, embarrassing, or a burden on others, without any tangible reason. This can lead to social withdrawal and low self-esteem.
To sum up: I haven’t described all the potential symptoms of ADHD—there’s insomnia, impatience, constantly losing your wallet, insensitivity to danger, whispering to yourself without realizing it, and so many others—but you should now have a much better idea of what it can include: not just problems with focus, but also with emotional restraint and many of the brain’s most important jobs in daily life.
2. ADHD is a quantitative disorder, not a qualitative one
You’d be forgiven if while reading these symptoms you’ve been thinking, “everyone has experienced that! I forget things or get overwhelmed sometimes. Do I have ADHD too?”
Well, you might. But probably not. (If you really think you might, go ahead and get tested, it definitely won’t hurt.)
My therapist explained it to me like this: every human being pees every day. But if I told you I was peeing 30 times per day, you’d tell me to talk to my doctor. Even though—get this—you know what it’s like to pee.
You know what it’s like to get distracted. You know what it’s like to be so upset you could scream. You know what it’s like to miss a deadline. These are normal human experiences. But ADHD isn’t an occasional inconvenience or a moment of carelessness; it’s a lifelong impairment that affects every aspect of your life.
That said, it is a spectrum. Some people with severe ADHD are unable to work at a traditional job or live independently, even with the best available treatment. Others like myself have more moderate symptoms and are able to cope (and even excel, in the right environment) with or without treatment. There is no well-defined clinical threshold between neurotypicality and ADHD. But regardless of one’s place on the spectrum, it’s important to understand that ADHD is distinguished from the occasional wandering mind or urge to fidget by being far more disruptive and problematic on a daily basis. You do not, in fact, know what ADHD is like if you don’t have it. But you have had experiences that can help you understand it.
(Trigger warning: the following paragraph may contain triggers for people who have suffered from ADHD stigma.)
Unfortunately, the unextraordinary vibe of many ADHD symptoms has given it a harsh stigma. There are many people, including a few doctors and psychologists, who have decided that ADHD doesn’t exist. People with ADHD are accused of being lazy, stupid, careless, self-absorbed, disrespectful, and disobedient. Many who go undiagnosed are led to believe that life is just as difficult for everyone as it is for them, and they simply lack the motivation and discipline that everyone else has. Those who seek treatment are told that medication is “cheating” or “just an excuse to get high.” Some workplaces refuse to make simple accommodations for ADHD, like quiet working areas and flexible hours. Many successful people with ADHD face disbelief when they disclose their condition, because “no one with ADHD could achieve all of that.”
Nothing could be further from the truth. ADHD is a real neurological condition. Its effects on brain development and neurotransmitter levels are well-documented. Scientists have been studying it for over a century. Approved and properly prescribed drugs do not make people with ADHD “high” or give them an unfair advantage. And when properly treated and accommodated, most people with ADHD can be just as successful and happy as their peers—but this does not mean they don’t have a disorder.
3. Unmedicated ADHD is a risky thing to have
After I started reading about ADHD online, I started noticing that I was getting a lot of targeted ads for lung cancer treatments. That struck me as odd. I’m not at risk for lung cancer; I’ve never smoked or been exposed to asbestos, and it doesn’t run in my family. Why was I being targeted?
I’ve since learned that the most likely reason is because people with ADHD are extremely vulnerable to nicotine addiction. If you have ADHD, you’re statistically twice as likely as a neurotypical person to smoke (4 out of 10 people with ADHD are smokers). You’re also twice as likely to develop other addictions, but smoking is the most common. Nicotine is a stimulant, and stimulants are effective treatments for ADHD; they raise dopamine levels in the brain, which increases focus and clears the mind. So given my search history, it’s not surprising that I was seeing lung cancer treatment ads. That’s just effective marketing. It’s a little surprising that I wasn’t seeing cigarette ads.
I admit the possibility that the ads were targeted to a very wide audience, as is the norm for new pharmaceuticals in the United States. Still, ADHD is clearly a risk factor for lung cancer, so the possibility of a narrow campaign on that premise strikes me as realistic.
Addictive behavior in ADHD extends to other things as well. One study found that 25% of obese people have ADHD, and most were undiagnosed prior to the study. (I am more than a little overweight; I believe this may be associated with compulsive eating—poor impulse control—as a result of ADHD.) ADHD has also been correlated with hypersexuality and thrill-seeking behavior. There remains a lot of research to be done in this area, but the commonality of all these things—smoking, eating, sex, and other thrills—is that they produce dopamine. ADHD brains, it seems, crave dopamine.
These risk factors disappear when the disorder is properly medicated. People with ADHD, especially children, who are diagnosed and medicated have no greater risk than their peers of developing a drug habit. This is surprising to many since the first-line medications for ADHD are stimulants, and any stimulant can be addictive. But the statistics are unambiguous: use of stimulant medication actually lowers your risk of developing an addiction if you have ADHD. One would guess that this is because it delivers the dopamine your brain needs, while being formulated in such a way and at such a dose as to minimize the risk of dependence.
This isn’t to say that stimulant abuse isn’t a problem. Certain ADHD drugs are widely abused (most often by neurotypical people). But for people with ADHD, they can be literal lifesavers.
I have no evidence on hand to support the claim that most stimulant abusers are neurotypical. However, I would be very surprised if that were not the case.
Undiagnosed ADHD is also frequently accompanied by anxiety and depression. I’ve been medicated for anxiety for a few years now. Looking back, I can see how my anxiety may have developed as a way to control my ADHD. Anxiety got me out of bed in the morning, pushed me to do my homework, and kept me from having outbursts at work—or at least, it did all these things often enough to keep me afloat. But it also did serious long-term harm to my health and happiness. And I’m far from a worst-case scenario. Many people develop depression, stress disorders, and other mental health problems because of untreated ADHD.
When considering the risks of treatment, it’s vital to also consider the very real risks of non-treatment.
4. There is no cure for ADHD
There is no drug or therapy that will cure ADHD. About one third of children are thought to grow out of ADHD during puberty, but even this idea is disputed by experts. In most cases, and possibly all cases, it’s a lifelong condition.
Treatments for ADHD are not comprehensive. Stimulants can help with focus, memory, and self-control (when they work, which is not always and not for everyone). Therapy can help people with ADHD develop structures and strategies to reduce the worst effects of the disorder. Mental health education can help family, friends and coworkers to be more tolerant and accommodating of ADHD’s quirks. But none of these will erase the symptoms. Even with the best medical care and in the best of circumstances, I will always have ADHD.
The good news is that having ADHD does not sentence you to a life of heartache and failure. ADHD can be managed very effectively, and people who have it can accomplish great things. And there are some upsides to the condition, too. Colloquially, people with ADHD are known for being playful, affectionate, and creative. Neurodivergent people are often gifted at thinking outside the box and coming up with innovative solutions. Every organization, every social group, every team in the world can benefit from having a few neurodivergent folks in their midst.
I won’t cross the line into toxic positivity by saying that I’m grateful for my ADHD. I echo the words of many other ADHD sufferers when I say I wish I didn’t have it. But there are a few silver linings, and I’m grateful for the life I have.
I am relatively new to this whole ADHD thing and I don’t have a psychology degree, so if I screwed something up, feel free to let me know in the comments. And as always, feel free to leave a comment or a question, here or on Twitter, if you’d like to talk.