This is not a post I wanted to write, for a number of reasons. I’ll get to a few of them later. But the main reason is because I know I’m probably opening myself up to a lot of stuff I’d rather not deal with. But if there’s one thing I’ve learned over decades as a gay activist is that it’s important and empowering to come out. If you don’t other people just tell your story as they see fit.
As long-time reader to Alternet, I’ve sighed and shook my head every time I read an article asserting that ADD/ADHD is “not real,” “a myth,” or a “made-up ailment” created to boost big pharma ‘s profits. I wondered if the writers knew anyone living with ADD/ADHD, lived with it themselves, and why I saw so few posts offering another perspective.
Then I realized that, as a sometime contributor to Alternet, I had remained silent for too long.
So, in the spirit of ADHD Awareness Week (which, of course, was last week) , I’m coming out.
According to the CDC, about 5.4 million children have been diagnosed with ADHD as of 2007. Up to 9% of school age children, and about 4.5% of the adult population have ADHD or ADD. There are millions of faces of ADHD, and I’m one of them.
Ten years ago, at the age of 33, I was diagnosed with Attention Deficit Disorder. At the time, I was on the verge of what would be another nosedive in a life that seemed to be one long slow-dance with failure, depression, and anxiety. ; I was just a couple of weeks away from being fired from yet another job. I knew the cycle well enough that by then that I could see the writing on the wall. Try as I might, there wasn’t anything I could do to stop it. And I did try.
Don’t Know Much About ADHD History
One of the things I hear most often from people who don’t “believe in” ADHD is that it has “only been an issue within the last decade or so.” This usually follows or is followed by claims that ADHD is a conspiracy of “genocide against black boys” (I’ve actually heard this) a “conspiracy to make men docile” (I’ve heard this too), or a “big pharma conspiracy to get us all addicted to their psychiatric drugs.” I wrote a post in response to all of this and more a few years ago, which included an ADHD history lesson.
Where to begin? First of all, we’re not talking about “high-energy children” that have just had too much Kool-Aid. And it hasn’t “only been an issue within the last decade or so.” Under one name or another, the characteristics known today as Attention Deficit Hyperactivity Disorder or Attention Deficit Disorder have been associated with each other, observed and recorded for over 95 years.
1902 – Dr. Still, a British doctor, documented cases involving impulsiveness. He called it “Defect of Moral Control.” He did believe, however, that this was a medical diagnosis, rather than a spiritual one.
“Deficit Moral Control.” Kinda has a nice, nearly Puritanical ring. Doesn’t it? Unfortunately, many people haven’t even gotten as far in their understanding of ADD/ADHD as Dr. Still’s 1902 assessment. Anyway, it became known as “Post-Encephalitic Behavior Disorder” around 1922, was called “brain damaged syndrome” for a while, got treated with stimulants as early as 1937, and then came Ritalin around 1956. The point is, ADD/ADHD is not a phantom condition that didn’t exist until it was invented in the 80′s.
It’s not new. In fact, it may be more than 100 years old. At least one article I found references an 1845 children’s story called “Fidgety Philip” that may be the first account of ADHD published in medical literature. (And if you ask me, “The Story of Johnny Look-in-the-Air” sounds alot like a kid with “inattentive type” ADD, such as yours truly.) And that’s just when it was documented and observed. It’s probably existed much longer. If you ask Thom Hartman, it’s actually prehistoric. Before becoming the focus of scientific study and observation, it was probably mislabeled much like schizophrenia was once believed to have its origins in demonic possession. But, alas, we live in an age where science alone doesn’t carry much weight when it comes up against what people believe.
It’s been known by different names, but ADHD ; been around much longer than a few decades. It’s been observed and described by scientists, authors, educators, etc., for more than160 years. But it’s probably been around as long as people have been around.
The difference is that back in the time of “Fidgety Phillip” and “Johnny Look-in-the-Air,” kids with ADHD were labeled as “bad kids.” Kids with inattentive ADD were probably labeled as “lazy.” People with ADD/ADHD were labeled as dumb, or — as the title of one book about adult ADD put it — “lazy, stupid, or crazy.” They got punishment instead of treatment, and ridicule instead of help.
History aside, there’s scientific support for the existence of ADHD as a “real” developmental disorder. Granted, the jury is still out on what causes ADHD, and it may never be narrowed down to a single cause, but there is some consensus among international scientists.
The central psychological deficits in those with ADHD have now been linked through numerous studies using various scientific methods to several specific brain regions (the frontal lobe, its connections to the basal ganglia, and their relationship to the central aspects of the cerebellum). Most neurological studies find that as a group those with ADHD have less brain electrical activity and show less reactivity to stimulation in one or more of these regions. And neuro-imaging studies of groups of those with ADHD also demonstrate relatively smaller areas of brain matter and less metabolic activity of this brain matter than is the case in control groups used in these studies.
These same psychological deficits in inhibition and attention have been found in numerous studies of identical and fraternal twins conducted across various countries (US, Great Britain, Norway, Australia, etc.) to be primarily inherited. The genetic contribution to these traits is routinely found to be among the highest for any psychiatric disorder (70–95% of trait variation in the population), nearly approaching the genetic contribution to human height. One gene has recently been reliably demonstrated to be associated with this disorder and the search for more is underway by more than 12 different scientific teams worldwide at this time.
Numerous twin studies demonstrate that family environment makes no significant separate contribution to these traits. This is not to say that the home environment, parental management abilities, stressful life events, or peer relationships are unimportant or have no influence on individuals with ADD/ADHD. They certainly do. Genetic tendencies are expressed in interaction with the environment. Also, those having ADHD often have other associated disorders and problems, some of which are clearly related to their social environments. But it is to say that the underlying psychological deficits that comprise ADHD itself are not solely or primarily the result of these environmental factors.The International Consensus Statement on ADHD quoted above was published in January 2002. Since then:
- A November 2007 National Institutes of Health study found that in children with ADHD “the brain matures in a normal pattern,” but “it is delayed three years in some regions, on average, compared with youth without the disorder.”
- Further research showed that stimulant medications used to treat ADHD do not effect brain size in children with ADHD.
- A September 2009 study brain scans of ADHD adults reported in the Journal of the American Medical Association linked ADHD to biological flow in processing of dopamine, which “alerts people to new information and helps them anticipate pleasure and rewards.”
- In 2011 Pediatric researchers analyzing genetic influences in ADHD found alterations in specific genes “involved in important brain signaling pathways.”
- Also in 2011, researchers using functional MRI ” identified abnormalities in the brains of children” with ADHD that “may serve as a biomarker for the disorder.” The results showed that children with ADHD “showed abnormal functional activity in several regions of the brain involved in the processing of visual attention information,” and that “communication among the brain regions within this visual attention-processing pathway was disrupted in the children with ADHD.”
- A new study appearing in Biological Psychiatry in August of this year found that “development of the cortical surface — which covers the region of the brain known as the cerebral cortex — was slower in children with ADHD.” While the findings no present clinical application, they may “help point to genes that control the timing of brain development.” Further research shows that these brain differences appear to persist into adulthood.
Along with biological and genetic influences, research suggests that ADHD can also be acquired — not through too much exposure to the internet, smartphones, television, computer games, etc., but through prenatal exposure to alcohol and nicotine.
Not of this will be enough to convince ADHD denialists, especially those who might consider information from sources like the AMA and NIH to be tainted, or a least suspect. But for me, and anyone who lives with ADD/ADHD, it’s at least an explanation for what goes on in our day-to-day lives and in our heads.
In My Head
Back to my story. I was diagnosed with “ADHD Inattentive Type” or “ADD, without the H.” The difference between the two basically comes down to the absence of hyperactivity. Thus most people call it “ADD” as opposed to “ADHD.” The proposed revision to the DSM requires six out of of nine symptoms to “have persisted for at least 6 months to a degree that is inconsistent with developmental level and that impact directly on social and academic/occupational activities.”
The nine symptoms of inattention sound like what most people experience from time to time. Who doesn’t have trouble sustaining attention during some activities? Who hasn’t had their mind wander during a lecture or a meeting? Who doesn’t lose things from time to time? Who doesn’t get distracted sometimes?
The key phrases in the DSM focus on the length of time the symptoms have occurred, and the impact on “social and academic/occupational activities.” I usually explain that the difference between ADD and regular forgetfulness, etc., is that the symptoms occur with enough frequency to have a detrimental effect on day-to-day life. And if symptoms are “inconsistent with developmental level,” then they’re occurring in a person who has no apparent reason to have such difficulties. (Thus, people with ADD endure a lifetime of hearing, “You should be able to do this.” The implication being that … well, I’ll get to that later.)
But I don’t think any catalog of symptoms can capture what it’s really feels like to have ADD. A few years ago, I saw a commercial for Strattera, a nonstimulant ADD medicine, that was close to the way I usually describe it to people:
Imagine that you’re sitting in a room with no doors or windows. There are no exits. There’s a television in this room with you. It’s on, it’s very loud, and it keeps randomly switching channels. There’s no power button. You can’t turn it off. There’s no volume. You can’t turn it down. You can’t escape.
(I recently read very similar description by Jake E.S. Taylor, a teenager with ADHD, in his book ADHD and Me: What I Learned from Lighting Fires at the Dinner Table.)
Now, imagine that you can carry that room around in your head. Television is just as loud and random as before, but no one else can hear it. Imagine trying to go about your daily life of going to school or going to work, having a relationship, or just trying to carry on a conversation. Imagine trying to do that in a world mostly full of people who don’t have random televisions blaring away in their heads, and can’t imagine anyone else really does either. Including you. “It’s all in your head,” they say.
Well, yeah. That’s the problem.
Medication, in my experience, doesn’t shut off that television. It turns down the volume, and slows down the channel switching. It doesn’t “cure” my ADD. But it does make the symptoms of ADD manageable, so that I can use the other tools I need to manage the my ADD symptoms.
Some of us manage pretty well without treatment, for a while. We compensate, not always successfully, but maybe enough to get by.
I got by for a long time. I actually made it all the way through high school without any major problems. My grades weren’t great. They were good enough to get me into local magnet school I graduated from, but not enough to get me on the honor roll. I did well in some subject. English Lit. and History were always my best subjects. Math and Science were always my worst. Always. But I could always count on my other grades to keep my GPA at least slightly above average.
That’s probably one of the reasons my ADD went undetected. I wasn’t obviously struggling academically. Sure, I had trouble in a couple of subjects, but I wasn’t flunking out. And I did well in other subjects. It would have been hard for a teacher to tell that I was missing a lot, because I was sitting quietly and appeared to be listening intently.
What saved me was that I was always a avid reader, I learned that most of what I missed in class I could get if I just did the assigned reading. If there was a term paper, that was even better. I’ve always been a writer. I usually turned in well written (if not perfectly spelled papers) papers that helped my grades. But behind the scenes, disorganization and procrastination threatened to sink me. In a pattern I would repeat throughout my life, I started the school year off the same way almost every year.
At the start of every school year, I’d buy the latest, ultra-organized binder —like the “Data Center” or “Trapper Keeper” that were popular in the 80s — with a pocket for everything, and even a handy class schedule waiting to be filled in. I’d get a five-subject spiral notebook, for taking notes in class. I swore to myself “This will be the year” that I stay top of things. “This is the year I’m going to get organized and stay organized.” I promised myself that I was going to keep track of my assignments, keep track of due dates, pay attention and take notes in class, etc.
It always ended the same way. My efforts at organization lasted a few months, at most, before the novelty of a new system wore off. Then I’d become overwhelmed and start forgetting to write down assignments. Maybe I’d even lose my binder. My notes would be nonexistent or indecipherable because I’d “quietly” zoned out in class, just like Deborah Moore described in an article about inattentive ADD:
Another inattentive tendency could be summarized by the adage, appearances are deceiving. Inattentive students often seem to be paying attention as they sit quietly, and, indeed, they may stare directly at the instructor for an entire class period. Yet, during this time, their thoughts have drifted from the real world around them. In such instances, their bodies remain stationary while their minds wander aimlessly through a universe of ideas and images; frequently, their academic performance reflects this lack of connection with classroom activities.
I could be sitting in class, staring right at the teacher, appearing to listen to every word. But that television in my brain kept switching channels. I would mentally “check out,” without even being aware that’s I was doing so. At the end of class, I realized that I’d sat there the entire time and suddenly realize that class was over and I’d everything the teacher had said. As a result, I missed a lot stuff, and struggled to catch up or just to keep my head above water.
The reason I missed stuff went back to my Inattentive ADD.
Children are naturally dreamers. It’s not unusual to find them staring out a window, lost in thought about some invented escapade. Daydreaming is how they create and explore new ideas.
Snapping back to reality can be more of a problem for some children than others, though. Kids with attention problems will stare off into space in the middle of class, preferring to stay lost in their own mind rather than return to the classroom. If trouble concentrating and focusing are constant problems for your child, they could be signs of ADHD.That’s another part of why my ADD went undetected. I wasn’t the kid who was jumping out of his seat, running around, and disrupting the class. I was the kid quietly staring out of the window. The disruptive kid is more likely to get immediate attention, as it’s obvious there’s a problem . The quietly distracted kid isn’t as likely to draw attention.That why those of us Moore called “Undiagnosed Dreamers” often go undiagnosed.
Ironically, the “low key” nature of inattentiveness may well have made it a more insidious force for personal disaster than the highly visible and dramatic hyperactive variation; these individuals simply attract less notice within classrooms and families. Described as “dismissed and undiagnosed dreamers” by learning disabilities specialist Paula Stanford, inattentive ADDers are usually diagnosed later in life than their hyper counterparts; in fact, many of them may never be diagnosed at all and spend their lives floundering and repeatedly failing to meet expectations.
Inattentive students don’t annoy adults or behave in a volatile manner. They don’t wiggle in their seats and disrupt students sitting around them. Indeed, they may even appear to maintain concentration by staring fixedly at a textbook or a lecturer for periods of time, but this apparent “focus” may mask a wandering mental state. As Stanford notes, “It’s hard to see distractibility.”
People…expect to see a child in the back of the class “bouncing off the wall.” This example child is always talking and can never concentrate on anything put in front of him. This child was never an example of me….I was not hyperactive; I just could not concentrate, memorize or work on something that did not interest me. (Excerpt from an essay by an inattentive ADD adult client of Brainworks.)
I recognized another part of myself in Moore’s essay when I read it years ago. As much as I relied on reading outside of class and writing papers to keep my grades up, I also relied on having good relationships with teachers who would bail me out by letting me turn in assignments late from time to time.
During my elementary years, without realizing it, I learned how to manipulate my teachers into letting me turn my homework or other assignments in late…phrases like “Well, I guess, turn it in tomorrow,” were frequent. Even with my ability to manipulate teachers, I still heard, “Why can’t you do this? Why don’t you concentrate? It’s not that hard….You can’t see past the end of your nose.”
“Why can’t you do this?” “Why don’t you concentrate?” Those the constant refrain from my teachers, along with report car comments like “Terrance could do even better if he applied himself.” That’s when I became acquainted with one of the most dispiriting aspects of ADHD. People assume you aren’t trying. You may be dancing as fast as you can, and still saying two steps behind. But nobody sees that. Maybe they don’t know about ADHD. Maybe they don’t “believe in it.” But they assume you’re just doing enough getting by.
Well, you are. You’re working your ass off, and just getting by. That is, until you’re not.
Hitting the Wall
Everything changed when I went off to college. I graduated from high school, thanks to my ability to compensate for what I didn’t know at the time was ADD. It cost me a lot in terms of stress and near-constant anxiety, but I graduated in the summer of 1987. That fall, I set off for college.
I only went 100 miles from home, but in terms of what I was used to it was worlds away. I didn’t know then that people with undiagnosed ADD/ADHD often “hit the wall” in college. I managed to get through my freshman year without seeing that wall heading straight for me. Looking back, there were signs.
By the second half of my freshman year, a major depression had set in. Depression had been a reality for me all through my school years. There were probably a number of reasons. (When you’re an effeminate, non-athletic, black gay boy growing up in the South during the Reagan era, how can you not be depressed?) Having undiagnosed, untreated ADD was probably one reason for my depression.
It’s not that ADHD causes depression, but it contributes to depression by its very nature. Someone with undiagnosed and untreated ADD/ADHD (especially into adulthood) has probably experienced a long series of failures: in school, work, and relationships, etc. The result is a sense of failure and low-self worth that grows feeds into depression with every fresh failure. Even when things are going relatively well, familiarity with failure causes feelings of anxiety, because you know it’s all going to fall apart again. You never know when or how, but you know it will. It always does.
My freshman year of college was the first time I was diagnosed with depression; or mis-diagnosed. I say mis-diagnosed, because the anti-depressants I was prescribed helped somewhat with my moods, but did little to alleviate the symptoms of untreated ADD that were contributing to the depression. Over the years, I changed dosages, and changed medicines, but little else changed. I felt better for a while, but by then, I was already on my way to hitting the wall.
I did hit the wall at the beginning of my sophomore year. I had reached the limit of my compensatory abilities. Plus, the drinking that started in my freshman year had begun to morph into full fledged alcoholism. In retrospect, drinking was probably a way of “self-medicating”; not so much to treat my ADD symptoms, but to forget the
The combination of all of the above, plus the death of a close friend that fall, was too much. I became so depressed that it would take me hours to get out of bed in the morning. I started missing classes. When I did go to class, I realized that I was in over my head in some of them (like Biology and Algebra), and stopped going. I flunked out of every that first quarter.
After a lot of tears and explanations, my parents agreed not to yank me back home to finish college. (After 18 years of growing up in the closet, I wasn’t about to go back to it, which is what moving home would have amounted to.) But they had a condition for letting me go back: I would not take a full load of classes. Instead, I would take a partial load — two classes per quarter, instead of three. That was the beginning of what I would come to call my “lost time.”
“Lost time,” Benjamin Franklin once said, “is never found again.” My sophomore year was the beginning my “lost time.” Though it took me a while to notice, I was inevitably falling behind my peers. In few years, I looked around and the people I’d started out with were graduating and moving on to graduate school, or starting careers. I was still trying to finish my bachelors degree. Those same peers would finish grad school, graduate from law school, or further advance in their careers while I continued trying to finish my B.A. After seven years, I finished.
Seven years. Three years longer than it was “supposed to take,” made even longer by a couple of failed attempts to pass Algebra during the summer.
I don’t think I could have put into words the sense of relief I felt, or the sense of loss that it was mingled with. The relief was that I finally finished. My mom and brother came to my graduation, and watched me don my cap and gown for the ceremony. The loss I felt at the time was because I could look around me and see how much time lost. The friends and peers I’d expected to graduate with in the beginning had long since moved forward in their lives and careers. I felt how much time I’d lost, and I had a strong desire to finally “get started,” and start catching up.
I didn’t know about the Ben Franklin quote then. In fact, I only came across it a few months ago. At the time, I had hope that lost time could be found again, or at least made-up for somehow. Almost twenty years later, my experience bears witness to the truth of Franklin’s quote.
Granted, those years were not a total loss. I got sober during my last year of college, and have stayed that way for 20 years. That’s something. That I managed to stay sober through all that would pass after graduation is the main reason I lived long enough to get my diagnosis.
It’s what I had to live through that gets to me. I’ll tell more of that story, and how diagnosis and treatment changed things for me, in the next post.