A brief warning for parents: This blog is about Tourette Syndrome, but it is not a blog intended for parents of children with TS, or children with TS (although both groups could potentially benefit. This is about the experience of TS as an adult by an adult with the condition. TS is associated with a lot of sensitive things that are sensitive for good reason, however someone should be willing to discuss those things. This blog is an experimental creative work, and this page is my reasons and justifications for what I am doing. Many things that are worthwhile are risky and I am working hard to make sure this is the worth-while part.
Who and What?
I am a 38 year-old trained molecular biologist/cell biologist who has had to put his science career on hold because of a diagnosis of Tourette’s Syndrome (TS) and Attention Deficit Hyperactivity Disorder (ADHD) in 2009. I spent the next 5 years using my science background to learn enough brain science, anatomy, psychology and many other things with the goal of understanding what it means to have TS (and ADHD). The result was one of those things that completely changes the way you look at yourself and your past. I found out that I was a member of a group of people with the most diverse expression of what is called mental illness that I have ever seen. And there were benefits! And drawbacks. An example of a benefit is that we process the rule based parts of language faster than much of the population at large.
We found that TS children were significantly faster than typically-developing control children at producing rule-governed past-tenses (slip-slipped, plim-plimmed, bring-bringed) but not irregular and other unpredictable past-tenses (bring-brought, splim-splam). They were also faster than controls at naming pictures of manipulated (hammer) but not non-manipulated (elephant) items. These data were not explained by a wide range of potentially confounding subject- and item-level factors. The results suggest that the processing of procedurally-based knowledge, both of grammar and of manipulated objects, is particularly speeded in TS. The frontal/basal-ganglia abnormalities may thus lead not only to tics, but to a wider range of rapid behaviors, including in the cognitive processing of rule-governed forms in language and other types of procedural knowledge.
That’s a hell of a lot of emotion to work through and what complicated it was how this new knowledge was showing me things about myself and my mind. I would be dishonest if I were not willing to admit that at some points I have been a little manic about this. In fact I tried to blog about this before and the results are hard to explain. (for some reason a fandom got mixed up in this, it was an interesting time). Emotions and TS are complicated which is why I’m doing this and have wanted to do this.
So I’m taking a chance and putting this up here. I’m going to slowly work through papers that talk about TS and tie together my hypotheses and reasoned speculation while giving an idea about just how solid the data is. And I’m going to try to do it at an average language level. Does that sound far-fetched? Good because I am doing this as a person whose neurological condition is in his very language processing, and who in centuries past would have been called demon possessed. I could use the pressure.
Pope Inocencius VIII supported the publication of the Malleus Maleficarum … written by two Dominican monks. In the book, they reported the case of a priest with no clear signs of cognitive dysfunction or eccentricities, which exhibited abnormal tongue movements, vocal tics and coprolalia whenever he kneeled in reverence of the Virgin Mary. He said that he couldn’t prevent those behaviours from happening. The priest’s symptoms were attributed to an act of the Demon and he was “cured” by an act of Exorcism.
In the same book, there’s also the account of a woman who uttered obscenities compulsively during the mass, which could be interpreted as coprolalia at the exact moment that the priest gave the final blessing, the Dominus Oubiscum. These should probably be the first written reports of persons with TS, whose symptoms were interpreted as signs of demonic possession, which resulted in them being targeted by the Inquisition and, not surprisingly, ending up in a fiery death at the stake.
So I hope that I am entertaining at the very least.
How: Two voices, me and…
Some of you might think that I’m too worried about risk, I can’t help but see this as risky. I tend to be very paranoid about how I present myself to society, (which might be connected to what is often called the “religion OCD”, Scrupulosity Ψ). At the minimum the tendencies shape my personality. It’s hard to describe but I am effectively obsessed about society. It took me some time to realize that I have spent my life stuffing the emotions and impulses related to that social obsession into a kind of “reality simulation” (possibly OCD intrusive thoughts related) that I can even support with some literature that references such a habit in TS as “mental play”. I use this simulation to try to think about my social environment (or fantasy environments) in terms of best/worst things, problems, strategies, and lots of other things. It’s actually a useful paranoia and combined with that language enhancement is very very interesting.
In fact the sheer number of changes to the structure and chemistry of our brains is such that, I can’t just use the language that we already have available to us and do this well. I’m going to have to get creative. This blog is going to get very metaphorical and analogical. I have a lot of symbols to use, abuse and create in order to get across what I need to get these things I see out for others to consider and criticize. It might be utter shit but I won’t know until I let other people see it.
But not every way of passing information on is a good one. Because of the nature of the material, social sensitivities (reasonable and unreasonable), and my own emotional investment I need to watch for things. My own bias coloring things is a problem so I need to create a process for separating myself from the material. I’m less sure about what other people are sensitive to, but for now I will try to be approachable and fair with criticism.
To fix bias I’m going to pretend my Tourette Syndrome is a demon in metaphorical role-playing. I will try to let those emotions come out as another voice alongside “mine”, which seems a risky thing to do on a social level at least. In reality “I” will be normal me as much as possible, but it will probably be a more analytical way of thinking more than “natural me”. This will be hard to avoid because Whatever TS ultimately is, it is about very simple, intense emotion and emotional connections to perception and action. It’s a childlike thing and as sensitive as this might be, it reminds me of a fundamentalist conservative religious stereotype. If you are a conservative fundamentalist religious person you have every right to be offended, but it is what it is. If I make a routine out of separating my analytical side from my impassioned side that might do the job in showing the reader what the science says and what I think and feel. Let’s see how much deeper this rabbit hole of social sensitivity goes shall we?
*Not only will I be presenting TS as a demon, I will be presenting MY TS as a demon. I am not every person with TS so I need to separate me from TS in general.
[I’m a bad influence you see. I’m a big chunk of selfishness and self-interest. I want to use the simplest and strongest language that puts me into everything in some way.]
*TS has to do with social memory and emotion in a way that can create urges to do socially inappropriate, even violent and hostile things. Racial epithets, insults, obscenity. “Fun” stuff huh? Still this will represent a cognitive system that everyone has. We are just convenient to learn about it.
[Fuck all of you. I have my own shit to worry about. Wait, I need your help and company sometimes don’t I?]
*TS has to do with physical sex. More male persons get it than female persons, but that can easily be a function of society treating male and female persons differently as a group. Either way there is a general system there as well.
[You are something of a tool to me. I don’t hate you, I like you actually. It’s just that I tend to see you in terms of me and what I feel and do.]
*TS has to do with sexual instincts. It might be a bit before I can talk about that one, but I can admit that TS is associate with various sex related excesses. Sexual instincts may just be more intense in general though, and there may be no innate tendency to violate the rights of others.
[Sensation, is fucking awesome.]
*TS has to do with gender. The personality characteristics are strongly associated with things considered “masculine”, but girls and women with TS seem to have more masculine characteristics. Someone is lying and I think it’s society.
[I’m a hedonist, assertive, unintentionally aggressive, a show-boater, an exaggerator, an optimist, I always have to mess with things and figure them out and I am similar things in female humans with TS]
*TS has to do with violence and aggression. I have to have a lot of self control to function with people best. It just seems to be what I am.
[I’m just over excitable. Who doesn’t like to run around with abandon?]
*TS has to do with patterns, connections, relations and sensitivity to such. And as I said it’s in my very language processes. The funny thing about neurobiology and language is it says I am literally in your head. So what part of my TS is in your head and what is it doing?
[Is this an appropriate time for an evil laugh? Yes I think that it is.]
I think that I will at least be entertaining.
So what will this “demon” do for me? It will let me get the emotions and associations out while still expressing the science for what it is. That’s not a bad thing. The bias that emotion contributes may or may not be justified. Bias is a neutral, it just means that your decision is pushed in a direction and most of the time we hear about inappropriate bias. To control bias you have to understand bias and make it a tool. It helps to be honest and as obvious about your bias as you can.
All of that was to say that this blog is about me and everyone. But every picture of everyone has to correct for the individual in telling the story.
 The Functional anatomy of Gilles de la Tourette Syndrome
Ganos C et al 2013. Neurosci Biobehav Rev. 2013 Jul;37(6):1050-62.
 Neurobiological Substrates of Tourette’s Disorder
Leckman JF et al 2010. J Child Adolesc Psychopharmacol. 2010 Aug;20(4):237-47.
 Tourette’s syndrome: from demonic possession and psychoanalysis to the discovery of gene.
Francisco M.B. Germiniani et al. Arquivos de Neuro-Psiquiatria, 2012 Jul;70(7):547-9.
 Mental play in Gilles de la Tourette‘s syndrome and obsessive-compulsive disorder.
Cath DC et al. Br J Psychiatry. 1992 Oct;161:542-5.
 Speeded processing of grammar and tool knowledge in Tourette‘s syndrome.
Matthew Walenski et al. Neuropsychologia. 2007 Jun 18;45(11):2447-60.