Yves here. This post on Tourette’s syndrome, written by a reader who has been diagnosed with this condition, departs from normal NC fare, but it still struck me as germane. It offers a window into the question of “What is normal?” and perhaps more important, “Why do we tolerate some types of divergence from normalcy and not others?” It’s become a staple of pop science to link various aspects of what most people consider to be attractive in the opposite sex to fertility or general health, in other words, to round up evidence to support the hypothesis that people are primed to make choices that will help their reproductive success.
But what about the psychological realm? The fact is that we don’t even understand our minds very well. Most people in the West identify that voice that talks in the head as them, but many Eastern traditions regard that mind chatter as a sort of culturally-programmed radio we listen to all day, and many of us like the stations that are heavy on anxiety, or delusion, or self-loathing. Meditation is a way to help establish distance from, and quiet, all that internal noise. And while we tend to think we are great at processing information and assessing reality, our cognitive capacities are quite limited. For instance, Nobel Prize winner Herbert Simon, who was also a pioneer in the field of artificial intelligence, discussed that people were not utility maximizers, but “satisficed” due to the limits on how much they could retain in short-term memory and the time it took to retrieve information.
To put it more simply: those of us who consider ourselves to be “normal” from a psychological perspective don’t think about it much, and regard our bouts of rage or paranoia or misery as moods, even though we inhabit them fully when they sweep over us. Yet even the nominally healthy have little control over, and often even less understanding, of their own processes, their cognitive limitations, and their perceptual biases.
Trying to intervene in conditions that can result in harm to self and others is a reasonable standard. But what about people who are merely odd, or difficult? This issue is complicated by the not-trival problem that low doses of mental predispositions that therapists increasingly pathologize can confer benefits to the individual, and thus to society, as well as impose costs. Examples are legion, but to name a few: Churchill was unquestionably bipolar. Nash was schizophrenic. Michangelo likely had obsessive compulsive disorder.
You’ll notice in the piece below that the writer discusses how he’s been aware of some of the ways in which his mental processes are unusual, and how he’s developed some strategies to cope, others to pass as normal. Now that he’s tipped into more acute symptoms, he nevertheless sees plusses to having Tourette’s and regrets the loss of these qualities as his condition improves. My sense is that this is not an uncommon reaction. A friend’s sibling is one of the rare functioning schizophrenics: he designs and produces laser light shows, which is an enormously complicated undertaking (as in merely handling the rental and shipment of lots of highly specialized equipment to other countries, is daunting). Even though he’s too willing to do things like walk off the roof of his apartment building when he’s not medicated, he dislikes the drugs because they dull him, and he feels they dampen his creativity.
Similarly, I’ve only read a smidgen of Oliver Sacks, but I recall him describing two men who had visual impairment: one who was blind, another who had no color vision. Both had operations that gave them normal vision. Both had them reversed. The formerly blind man, for instance, was unable to overcome his sense of disorientation (he knew who his cats were by how they felt and the sounds they made; he found having to relate that to what they looked like difficult and unrewarding). Similarly, the man who saw only in black and white (which was really extremely fine gradients of grey) had tremendously acute distance vision. He lost that when he gained the ability to see in color, and felt he’d come out worse in that exchange.
So I hope readers will see this post as an effort to show them a set of experiences that they can’t encounter directly.
By a regular reader of Naked Capitalism who has asked to remain anonymous
A few days after surgery I got Tourette’s syndrome. Adult onset Tourette’s is rare, and usually happens in late middle age, like it did for me. Like Jeff Zucker’s (CNN president) recent Bell’s palsy, it is neurological and should fade away in months or maybe much longer. There are mostly sudden movements (tics) of the head and shoulders, odd facial expressions, grunts and squeaks, and a need to squirm. Mornings are better and Sleep is hard. Some days are much better. The symptoms are hardly a disability. I now tell people to expect it, and there is no pain. 10% of those with Tourette’s swear suddenly. I do not. But I think I understand why they do.
However odd it looks from the outside, it is fascinating inside. I have always liked to do experiments on my mind, by measuring how smart I felt in a meeting quantitatively, and how long I could concentrate, and how much I could remember. One time I trained myself to be able to look straight at something and have one (only a small one) object in my vision disappear. I never considered these experiments compelling. I just thought they were interesting.
Neurological science is in its infancy and simple ideas remain contentious. To get me through some of the bad weeks I was taken on and off different medications to control different parts of my brain. You learn the words dopamine, serotonin, anxiety and pain like letters of the alphabet. Each turned up or turned down some part of my brain that I can name, and vaguely can isolate emotionally.
Henry Markram is a leading neurology researcher who has developed a theory of autism here. His son is autistic. He has demonstrated the neurological phenomenon that leads to autism. The autistic mind is overstimulated by the senses. They grow twice the number of neurons for the senses, and the effect is many times that because the incremental sensory input causes a learning multiplier. He has also been vocal about his own hypothesis that the most debilitated autistics were the ones with the highest IQ.
Tourette’s is not considered to be on the autistic spectrum. Homosexuality used to be on some spectrum. Spectrum Splectrum. I certainly would never have been considered for a diagnosis of autism. I would not have been given a diagnosis of Tourette’s before now. It is widely understood that Tourette’s is neurological and demonstrably changes how the mind is wired. Just like autism. It is also noticed by many that there are overlapping traits: movements, explosiveness, quirky affect, and weaker social skills. I have all of those issues. This is not a compelling correlation, but certainly interesting.
It is impossible to talk about this without bringing up some famous people who had these same overlapping traits.
Most famous people have had myth makers, so research is needed to detect explosiveness and strange movements, but each symptoms can be found. It is awkward to seem to compare yourself with these famous people when they are all genius’s, and you are not. But it was their genius that made them famous, and not their affect. These were also my hero’s that I read about my whole life: Albert Einstein, Bill Gates, and Thomas Jefferson. It is impossible to diagnose anyone from a distance. Even if you could, no compelling argument could follow.
Each was a risk taker in their profession, but also in their lives. Each had great intimates, both professionally and romantic, often many. Tourette’s is closely linked with OCD or ADHD (sometimes both). With the exception of Jefferson (who was essentially tutored), all struggled with formal education.
It is obvious that each of my heroes had big ideas and each had a firm grasp on the details of their ideas. They certainly had strong opinions. You see this in the research, Tourette’s folks have this big picture, and they have these small details, and grasp it in context. I sure do. My big ideas would seem delusions of grandeur if hadn’t actually succeeded sometimes. I know that I will never create a worldwide network of supersonic trains running at 4000 mph in vacuum tubes in my lifetime. But I can show you a surprising amount of detail about how it would work and how it would be built. I did start a venture capital backed company at 24 and sold it a few years later based on technology that was pretty big at the time. Big ideas clog up the brain, and make you forget to eat, and make you lose track of time.
The world is also full of restless dreamers that go nowhere. Many look just like me and my heroes.
I will put a gentle theory out. It is not compelling. Some people are born bright and born curious. The path to dysfunction comes from not being able to regulate the stimulus. The two stimuli that need regulation are stress and the senses. Think of the brightest and most capable person you can, who also had superb interpersonal skills. I will make a large bet that when you were with that person, two things are always true. They were calm, and they listened to whomever was the focus of the room. I can’t do either. If you are bright, and curious, and can regulate your stress young, and can regulate your senses young, then you might become one of those people.
An autistic child can be calmed, apparently, by externally managing sensory stimuli. I cannot. I can get excited by two ants in the pavement, and can get upset by a slow elevator. I am excellent at seeming calm, I slow. My. Words. Down. And. I. smile. And. Then. I. say. The. Persons. Name. and. I. repeat. The. Last. Thing. They. Asked. Of me. I look into eyes, and ask sympathy for quirky movements.
Don’t believe my acting, I am not calm. If asked about my food preference, I might attack the question of whether to eat chicken or beef for dinner with the same precision and sense of urgency as I would be on how to acquire lion for dinner from a hunt. Or I might not even hear the question. As a result, I sense I am unlikable, or maybe unapproachable. Unless, of course, you like chronic intellectual stimulation or unless you need an answer to a hard question. That’s okay. I like my thoughts too, and also prefer calm people.
It seems that stress and anxiety and fear are all kind of wrapped together into some hard wired neurological package. Fight-or-flight flips the brain. The immune system shuts down, and so does digestion. You have no sensual (working) memory, but have lots of abstraction memory. Learning happens 10x faster. And here is my really new discovery: The mental filters shut down. I had two very unique experiences that each caused me to explicitly feel how mental filters worked. I have clear before and after memories.
The first is more benign. I was in a lot of pain, and did what most ADHD adults do, and went to my addiction. My addiction is best described as day dreaming. But high anxiety day dreaming still needs to feel good. For it to be calming, I need to think about a big and detailed idea as if my life depended on a solution. I chose to write a novel, because I knew I could throw it away later, with no loss. It worked great as a long lasting pain killer. But when I went back and reread the pages that I wrote while in my Tourette’s mind I discovered a repeated mistake that I had never made before. All words were written phonetically. ‘Our’ was written ‘are’.
There were also other ‘obvious’ mistakes that would easily have been caught if I read what I was writing, which is exactly the point. I was not. I could see and type, but I could not read and write. Apparently reading and writing are filters. But without filters it was fast. A man sat on my shoulder and in a clear voice recited his lines to me. He figured out his own role in the plot, and was perfectly aware of the rules I had given him and the story. The novel is unlikely to be finished even after hundreds of pages of writing. But the novel is not the story.
The second is quite physical. There is also a filter between language and the mouth. Sometimes I cannot stop myself from saying the wrong thing. I am not talking about cussing here. Sometimes I will have 3 or 4 sentences built up in my head that I am praying I can keep in my head. Once they escape, I own them, and no excuses or explanations will make them belong to neurology instead of to me. It is far easier to explain a cuss word than it is to explain an expertly detailed social slight said to an important acquaintance. Social skills are no problem. Controlling social skills is the problem.
With Tourette’s you feel the filter between the mind and muscle disappear. My whole life, and into adulthood my muscles were always tense. I would conceal this by posing in a manner that made me seem casual and relaxed.
Look closely, and you’ll see twitching and you will see athletic response times to every stimuli. Fast responses, fast learning and no pain. It is anxiety while feeling great.
The tics on my first day were more painful than the second day. Adjusting to them happened very quickly. Maybe only late-onset Tourette’s patients get this experience. I got to observe how my body and mind reacted for the first times. Zap bang. My head moved 45 degrees to the left so quickly it was startling. The electrical feeling bounced around my nerves for a few seconds, and for longer than that there was a thud feeling. It is a much smaller version of what you feel when you fall off a roof and bump your head. I suspect I quickly learned to do two things. First I learned to anticipate the tics. The muscle tension will rapidly rise in a single muscle just before the muscle fires. Your brain learns to detect this, and instantly raises your already high anxiety. Your brain rushes in to find the muscle and then HELPS the tic. Adding muscles makes the tic rounder and bigger and MUCH less painful. I am sure this is how a guttural ggggkkkk sound that is emotionally shocking turns into a similar sounding cuss word with similar emotions. Tic modification is subconscious.
There are several ways to repress tics. One is concentrating on the tic. This causes anxiety to rise quickly. Another is to concentrate on something inside your mind. This always works. Social situations can only cause anxiety to rise, because you have this tendency to be unfiltered which has social consequences, but you try super hard to appear normal.
The advantage of the Tourette’s mind is exactly the same as the advantage of the autistic mind. There have been autopsy MRI’s which have shown this, although I can only imagine how contentious this science must be. There are brain patterns that show a brain overflowing with circuits that do not exist for healthy people who only use 5% of their neurons. There was no garbage collection in these minds. Thoughts and memories were stored until the skull was full. Of course this is all a matter of degree between patients, and it is hard to interpret MRIs of dead people, even by experts. But there does not seem to be much disagreement that brains can run in overdrive for extended periods of time.
Most Tourette’s patients do not want to lose their gift. Mine will fade, but I already grieve its loss. I suspect that I have always been Tourette’s in some way, just less than now. The clarity of thought and precision of detail and hunger for the stars is hard to describe. I liked Einstein’s words. “I just rode on the back of particles.” Autistics describe their thoughts as simulations, while most people think in language and socially formulated logical constructions. I am hated and loved for my inability to see consensus and tradition. I am loved and hated for my ability to construct in the abstract.
I do want to come out of the closet and give people a name for my condition. It helps others feel safer. I am only a little concerned that it will harm my career. It does not harm me for people to know that I cut classes from 6th grade through college, and self-taught the course material. It is already clear that I know my field, and can function at some acceptable level. But even a little concern requires caution. We should all appreciate when others come forward, as Zucker and Boyle have done with their neurological illnesses, and not accuse them of ill intent. Both helped me in my hardest month.
What worries me is how suggestible I am. You could not convince me to do a crime, mostly because I am not listening to people who are suggesting things like that. But when I read about a disease I get the symptoms. My life is the definition of the placebo effect. Learning about neurons will cause me to build a model of a brain in my mind, and try to get my actual mind to behave like the model. I told people in a meeting that my muscles might jerk and not to worry. Guess what? My muscles jerked the entire meeting. I do not want to give myself permission to be dysfunctional. It is better to try to stay as integrated in my social situation as is possible. It is better not to let my mind wander freely.
A theory on how autistics and Tourette’s and ADHD and OCD minds are created is decades away. I will present my own theory. Without double blind studies and a no childhood diagnosis (plus my placebo effect) this theory cannot be compelling. But I think it is interesting.
If you cannot regulate anxiety or if you cannot regulate your sensory inputs you are at risk, especially during the first year or two of life. If you are smart and curious, then the changes in your brain will be greater.
If you cannot regulate your senses, then you will be anxious a lot, and your mind will chase lions in spectacular detail for a lifetime. You will have few coping skills for any world without lions. The lions are not all scary, but they are always intense. This is autism.
If you can control your senses, but cannot control your anxiety, then you are in the constellation of Tourette’s and ADHD and OCD, depending on which tool you used to manage the anxiety.
OCD finds calm from reducing complexity through repetition and beliefs. I see this in people, but do not know it myself.
ADHD finds calm from an addiction to a feel-good activity like eating or running or risk taking or conflict.
These OCD and ADHD activities actually turn off your senses. If you want to stop seeing and hearing and feeling, try maximizing your stress and maximizing your dopamine with an amphetamine overdose. The lions’ hunt needs no sensory overload. The hunt also turns up your memory making abilities by 10X.
Tourette’s may be a symptom and not a category, but I am guessing it comes from learning to stop feeling pain (which is a sense too), since it involves the muscles. I find my addiction inside a world within my head, most addictions involve the body, which makes you ‘feel’. Sometimes I have to pick and gnaw on my skin and gums, but mostly I do fine with daydreaming.
Habits are formed young, and language is formed young, and the learning mind is formed young. That is why there are different symptoms between different people. When an ADHD kid is required to take Ritalin because he was disruptive in his class room, the kid still has a different learning style. He learns 10x faster, and he cannot handle stimulation during the other 90%. Net of being distractible, he isn’t really learning school work any faster and probably slower. His lion mind is doing most of the learning. In the classroom he is under stimulated by the slow pace, and he is overwhelmed by the matrix of potential social interactions. He is unresponsive to intervention.
I go to few meetings anymore, but have deep and loyal relationships. I am not reliable, but I reliably create value for my work and my family. I am not socially skilled, but can communicate and relate deeply to people, teams, businesses and shared goals. I am not aware. But I know what is important.