To better manage my tics and mood, I see a psychiatrist, a behavioral therapist, and a neurologist. The team shares notes with each other, and I’ve gained a lot of traction thanks to them. My anxiety has decreased, and I’m able to relate differently to my obsessive thoughts, realizing they are not beneficial. On the other hand, my neurologist doesn’t seem to see much of an improvement in the tics themselves, commenting that they’re still very severe and discussing the option of brain surgery (I’ll probably write about the surgery in a later post). He pointed out that throughout his career, he’s seen several cases like mine, in which the anxiety decreases but the severity of the tics doesn’t follow along like it should. Then, my neurologist, Dr. Juncos, revealed that those patients like me all ended up having ASD.
ASD stands for autism spectrum disorder, which is a cornucopia of related disorders ranging from mild to severe. For example, ASD includes Asperger’s and of course autism. The symptoms often include, but are not limited to: social deficits, sensory issues, and stereotyped behavior. When Dr. Juncos first mentioned it, I went into a state of denial, arguing that none of my friends and mentors ever thought I was on the spectrum. But then I thought about it some more, and I remembered that my maternal cousin has severe autism. Since I share 12.5% of my DNA with my cousin, is it plausible that I might have inherited genes that predisposed me to ASD, or downright caused ASD?
It makes some sense if you know me and if you think about it. Sometimes I mess up reading social cues, and I almost always prefer to be alone than with a group of people. I honestly didn’t make many friends in college until I started being a teaching assistant and gained rapport with my students. And my tics could be the example of the stereotyped behavior so often associated with ASD. Finally, although I’ve told no one this before, I am very sensitive to loud sounds such as fireworks, popping balloons, or even audio in a movie.
There is no way to know for sure, and this uncertainty is an emergent property of the Diagnostic Statistical Manual (DSM), a really thick book that outlines how to diagnose certain disorders. The problem is that there is no biomarker available for physicians to accurately diagnose a patient; the physician needs to rely only on behavioral observations and an educated guess. For these disorders, no one can say, “Well the patient’s levels of substance X are below the threshold of Y, therefore patient must have disorder Z. Moreover, psychiatric disorders rarely stand alone—they tend to bleed into each other, which makes an accurate diagnosis much more difficult.
Having ASD wouldn’t be the end of the world. In fact, it might just open more avenues for treatment and for my doctors to advocate for me in my situation with Emory. A diagnosis of ASD could explain many things, from my tics to my sensitivity to loud sounds. I would appreciate your opinions on whether a diagnosis of ASD would make sense, given what you know about me. I promise I won’t feel offended or take it negatively, and you’re welcome to use a fake name when you leave a comment!
Tourette Syndrome Awareness Month started on May 15, and it runs until June 15; don’t ask me why they decided to start and end in the middle of the month! As part of my advocacy efforts, I thought it would be interesting to share my recent perspectives on my own illness. As with other posts, I will try my best to fill this post with positivity and optimism, despite the fact that having Tourette’s absolutely sucks and has caused me so much grief over the 20-year span.
I will start off with a basic outline of my story with Tourette Syndrome (TS) for people who haven’t met me (because if you meet me, my tics are very obvious). I have what my doctors classify as “severe” TS, and my tics are complex, ranging from vocal outbursts to cursing to banging my knees against the table until they bleed. My tics got significantly more severe and complex in college, perhaps because of the stress, and they got entangled with elements of obsessive-compulsive disorder (OCD). Sometimes I have to do a tic until it “feels just right” in my mind. As an aside, I want to draw your attention to the diagram that the Tourette Association of America (TAA) has put out. (Click to enlarge!) The point is that very few people just have TS, and TS often comes with a slew of other comorbidities that complicate treatment and compromise quality of life.
When I was in high school, I didn’t have any tics that caused me to swear, a symptom called coprolalia (Greek for “shit-talk”). I was lucky because having swearing tics could have gotten me booted. I was also lucky because my teachers were compassionate and because I was academically gifted, so many teachers thought it would be a waste of intellect if I were sent to special education or another school. For these reasons, I viewed my TS as more of a blessing than a curse because I had the chance to advocate for myself and to spread messages of hope throughout the school. In college, however, I gradually began to change my perspective as managing my tics became harder and more misunderstandings arose. My access to care was also very limited at Brown University; according to the TAA, at the time there were no known neurologists in the greater Providence area who specialized in treating TS. This makes sense, though. Movement disorder physicians often prefer to specialize in disorders that make money, like Parkinson’s and ALS. Treating Tourette’s just doesn’t rake in as much cash.
Now, I’m a graduate student at Emory down in Atlanta, GA, and I’m fortunate to have an extended team comprising a neurologist, a psychiatrist, and a behavioral therapist all dedicated to treating my TS and its comorbidities. Emory is the largest employer of Atlanta (beating even McDonald’s), and the University owns an entire building called the “Emory Brain Health Center.” After a few years of almost weekly therapy and monthly doctor’s visits, I have gained some control over my tics, and I’ve acquired the ability to relate to my obsessive thoughts differently so that they don’t dominate my behavior. This improved control comes at a price, though: I’ve now begun to hate my TS. It makes sense if you think about it. I retrained my brain to realize that my obsessive thoughts are useless and my tics serve no purpose, and I also practiced not engaging in the tics when urges arise. As I got better at this, naturally I thought to myself, “Why do I even have tics in the first place?” I began trying to suppress every tic I could, to a point where I started having tic “rebounds,” increased tic activity after periods of suppression. I’m currently working with my therapist on how to manage this bitterness.
I will probably write another TS-related post before June 15 because I’ve rambled on for too long already. But I wanted to share some tips you can keep in mind about TS and people who (might) have TS. I’ll be happy if this affects just one person. Some of these apply to other medical conditions as well:
Much love to everyone, and thank you for reading!
I would be lying to you if I said I have no trouble being productive. I have a lot of trouble, and most of it revolves around getting started on a task. I’ve been watching YouTube videos, reading online articles, and consulting friends on what motivation feels like and how i might be able to apply it to my own life. But recently I discovered that I can’t use other people’s strategies because they’re just that: other people’s. I need to find the strategy that works for me, and I’m still searching.
There’s a song lyric from “Wanksta” by 50 Cent that has stuck with me since the beginning of college. In the second verse, 50 Cent raps: “Damn homie / In high school you was the man, homie / What the f*** happened to you?” I see a lot of myself in this quote. In high school, I worked so diligently and had no trouble starting assignments, whether they were trivial or important. After high school, however, I began having a lot more trouble being productive, and I barely made it through college, evidenced by my mediocre grades and lack of achievements. In high school, many of my teachers believed that I was the most capable person in my grade, but I feel like I’ve let them down by being unproductive and, quite frankly, lazy.
The dilemma is this: I wholeheartedly believe that success results mainly from hard work, yet I can’t seem to put in the work necessary or the work I want to get done. Maybe it’s because I’m lazy, and maybe it’s also because I want to do so many things that I become overwhelmed and do none of those things. There are so many things that interest me, and I want to find the time to do all of them. In fact, I did a rough calculation of the time I want to spend on the tasks I want to do, and I found that I need 26-hour days and zero sleep if I wanted to get everything done. Obviously this is impossible, which might be why my brain says “screw it” and tells me not to even try. I think a healthier approach is to be more realistic about my goals and prioritize them, but I want to do so much that I feel inadequate before I even start a task.
My therapist and I came to the conclusion that I adopt an “all-or-nothing” mindset—I might be a Sith because I deal in absolutes! I either have to do everything, or I do nothing. I want to embrace a healthier way of thinking that allows me to get some stuff done without feeling guilty about it. I admit that I was not successful in committing to eating out twice a week in the last blog post, but I feel more confident in the goal I’m about to set. For this week (Tuesday, May 7 - Tuesday, May 14), I will practice self-compassion and be willing to feel uncomfortable if I don’t get everything done. It seems like a vague goal, but it’s a start.