The Truth About Tourette’s Treatment

If you have been looking at the list of posts I’ve written on Tourette’s, you may be a bit curious as to why I haven’t devoted any posts to Tourette’s treatment. And the main reason is, there aren’t any proven treatments for Tourette’s. So here’s a list of things which research has shown to be at least somewhat effective in treating some forms of Tourette’s:

• Neuroleptics such as Risperdal (however some see tics worsen, and many experience adverse side effects)
• Neuroleptics on low doses AND a nicotine patch (reduces the side effects, may have unknown adverse)
• Nicotine alone (more anecdotally and from case studies. Research forthcoming)
• Zoloft  or clonozopine (usually only when OCD tendencies are also present)
• Cannabis (same situation as nicotine)

Here are some non-medical interventions that have shown some promise:

• ABA therapy on a reinforcer for X number of seconds spent without ticcing (according to a certain protocol. Be sure to have supervised by professional)
• Occupying the hands with fidgets and the mouth with gum
• Weighted clothing/blankets

The truth is though that no treatment will work for all individuals, and there are some who will not find an effective and not adverse treatment protocol.

Note: When evaluating therapeutic effectiveness, note that the natual course of Tourette’s is to wax and wane in tic frequency. This may sway results.

Rid of Risperdal

After a year on the drug, Lawrence was finally weaned off of Risperdal while in the feeding clinic. He now takes Zoloft for his OCD, but this is his only medication.

For Josh, Risperdal was a miracle drug. He calmed down, stopped biting, paid attention, and made social connections. It was a perfect fit for his needs.

For Lawrence, this was not the case. I hadn’t known Larry before he started, but I’ve certainly seen a difference since he stopped. He’s hyper, but not excessively hyper. He dances and sings and runs just like a typical six-year old. He gets excited to go for a ride or get in the wagon. He’s upgraded his physical shows of affection, and is learning words at a much faster pace.

There have been a few drawbacks to taking him off the Risperdal. Changing his diaper used to be a 12-second procedure, now he always runs away before I can even clean him. The process has become a four-minute battle, and that doesn’t even count trying to get his pants back on. He’s also developed a, in Aaron’s words, “love for his peep”. Regardless of how many times he try to redirect him, as soon as we turn around his hands are back in his pants. Anyone have any advice on this? We don’t want to give him a complex, but at the same time he can’t spend his time with his “peep” hanging out of his diaper.

Overall, however, I think removing the Risperdal was a good decision for Lawrence. He’s becoming more engaged and growing and learning faster than ever before. I hope this works out for him.

Ask An Aspie: More thoughts on Scripting

Since the previous post, I have been thinking a great deal about scripting and the role it plays in my own life. I obviously have the capability for spontaneous speech, but often I find myself resorting to scripts. Why use scripted lines when I can generate my own speech? For the most part, my scripts come to the surface when I’m encountering an emotional issue. Use of scripts can be brought on by three key occurences:

1) A situation where I don’t know how to respond. Say I’m talking to a friend and they bring up something I’m totally unprepared for, like that they’ve been molested or are abusing heavy drugs. My first thoughts are typically a list of movies and songs which include this sort of dialogue. I can pull a line from one of those and use it to stall for time while I try to think of something relevant to say. Or I can use it to deflect/diffuse the situation entirely. Say for example, we both watched a film where a similar event happened to a character. If I pull out an immediately recognizable line from the film, the other participant usually laughs, which then takes the attention away from the difficult subject matter. Mama Mara mentioned that her boys use the phrase “V-E-R-N” from Rainman when there is an issue, and this tends to bring the anxiety level down.

2.  When I’m emotionally overloaded. In times of emotional overload, it seems the whole brain-to-mouth connection is disrupted. I can’t find any words to express what’s bothering me, so I typically resort to a scene which evokes the same emotions even if it does not relate to the triggering event. I’m reminded of a time when Charger, the intern, her boyfriend, and I were playing a game of Sorry, and the boyfriend had to take a phone call and left the table. Charger became visibly anxious, and started exclaiming loudly, “Something is missing! Is it here? Is it here? Is it here?” We could all see the guy, so there was no direct connection to the situation. But what he was broadcasting about his emotions was very clear: The order of our game has been disturbed and I need it resolved.

3. When one lifted phrase can capture a whole scenario. I often say that I think in paragraphs but need to speak in sentences. Everything floats around as fully developed ideas, but I obviously can’t release the whole flood simultaneously. I need to chop it into single sentences presented in a sequence others can understand. I call it the “Brain English to Social English translation process.” But there are times when a line from a movie or book can capture the entire thought floating around in Brain English. For example, a gentleman on campus and I have begun the courtship process, and there is a flurry of thoughts in my mind about the meaning and role of secrecy and the way it is affecting the relationship and how we can work through that. Whenever I’m thinking about the topic, the line that immediately comes to mind is the opener (and closer) of the Outiders: “As I stepped out into the bright sunlight from the darkness of the movie house, I had two things on my mind, Paul Newman and a ride home”. We see it all here, the emergence from secrecy, the idealization of how things could be/who we could be, and the knowledge that practical concerns are preventing us from reaching that goal.

The notion that there are people who don’t process their thoughts in this manner is actually a bit strange to think about. With all the media we take in in our lives, have they seen no one who can capture the thoughts of the moment better than they?

I’m not sure if my explanations are making sense. As the title implies, this post is a work in progress. I have the brain English for it, but I need to translate it into social English and the process is slow going. I will likely be refining these thoughts further as time goes on.

Not being defined by my disability

The school year is beginning anew. Classes are meeting for the first time. Professors are forming first impressions of their students. Freshmen are arriving on campus and trying to navigate the pre-established social order.

The arrival of the freshmen means there are 650 new students who don’t know about my Tourette’s. This equates to 1300 eyes turning to stare as I walk down the main pathway. 650 voices whispering crude jokes, nasty comments, or just the curious, “What is that dude’s problem?” These are 650 friendships killed before they ever had a chance to blossom, because people are afraid to get to know the weird kid (Is he high or something? Maybe he’s just crazy…)

As I pondered this issue, I came up with a few solutions.

The first was a sandwhich board reading, “Yes I have Tourette’s. No staring at me won’t cure it.” But that  would just draw extra attention to my differences, something I truly wanted to avoid.

The second option was to say nothing, to remain completely mum about the issue. The TS acts as a built-in filter against people who are judgemental or shallow, so I would be guaranteed only to start friendships with those who had matured beyond the “appearances are everything” stage. But then I realized this was college freshmen I was talking about. I would bet less then five of the 650 have passed that developmental milestone.

The third option, the only one of which had a chance of being effective, was to casually talk about my Tourette’s in conversations where it was relevant. This might sound impossible (when is TS relevant, and how do you casually mention it?) but I’ve accomplished it three times already and have only had positive reactions.

• Time 1: In the Freshman seminar I TA, we had students take as many jellybeans as they desired, and then for each jellybean reveal an interesting fact about themselves. My three: -In 9th grade I had to jump into a limo with a man I’d never met in order to escape a man on PCP with a knife and a piece of broken glass. -I have Tourette’s and make weird noises and movements sometimes, but it’s a neurological disorder which isn’t contaigous or deadly. -I was bitten three times this summer by a child angry I put on the wrong Sesame Street Video (show off arm scars). This way I got the information out, but I ensured I had other topics which would make far more interesting conversation fodder after class. (Moreover, I won for most outrageous factoid with the PCP story).
• Time 2:  In my autism investigations seminar, we have to discuss our interests in neuroscience in a roundtable fashion. After I talk about my interest in autism, I say, “I’m also fascinated by the use of drugs other than antipsychotics to control Tourette’s, particularly nicotine and marijuana. And yes, I know from personal experience that both are effective.” The class laughed, and though it might have registered that I have TS, the fact that I know where to find good bud will trump any reservations they have about my disability.
• Time 3: This time involved a prolonged tactic. The professor was very strait-laced and there was only time for one interesting fact, so I had to use the TS one. But I made sure the students didn’t leave with TS being the only association with my name. During a discussion of the importance of the Victorian period, I made a bold claim about no one remembering female authors who wrote prior to the 1800s. Thi stimulated a great deal of debate and discussion, and suddenly I was the “daring statement guy” instead of the “guy with Tourette’s.”

I have two classes left which have not yet met, one beginning today and the other on Monday. For both I plan to utilize one of the three tactics listed above. By the time Monday ends, I will have told roughly 100 people about my TS, not counting those who knew from last year. On a campus with only 2100 students, gossip spreads like wildfire, and by next Friday, I should no longer be an oddity, but rather a kid whose had cool adventures, smokes good green, can have a stirring intellectual debate, and oh yeah, has Tourette’s but not the cursing kind or anything.

Carl: Phase 2

Carl reaches the end of 6th grade and he and mom attend the “Guidance Counselor meeting”, where they tell you how you will be placed in middle school. The Guidance Counselor tells mom that due to Carl’s disabilities they have no illusions that he will be able to handle an average “Regents” class or a language, so he is scheduled for all “general” (non-diploma track) classes. My mom insists that Carl will perform at the level expected of him. If he is placed in a general class, he will do general work. If he is placed in a Regents class with proper support, he will be able to perform at Regents level. And she also requires that they schedule him for a language, because all kids should at least be able to try to learn a foreign tongue. So entering seventh, Carl is signed up for a regents schedule and a Spanish class.

Grade 7: All of Carl’s supports except PT are removed. The school says that if Carl is capable of attending a Regents class, it must mean he doesn’t require additional assistance. His 504 now only includes extended time for exams, a scribe for standardized testing, and an allowance to circle rather than bubble-in scantrons. Carl aces spanish and social studies, runs a B in English, and a C+ in Science and a C in math. Carl begins to have to write book reports. My mom decides to read his write-up on the Crucible, and finds inside a paragraph devoted soley to Willie Mays (the baseball player). When asked, Carl explains that the book was so boring, he thought having Willie Mays in it would be the only possible improvement. Mom begins to have to read and discuss each report with Carl.

Grade 8: Similar grade profile. Carl attends the same social group I will attend 4 years later. He ceases to hang out with his grade-school buddies who have recently become interested solely in weed and porn, but finds a new friend from Karate and is accepted into that group. Carl meets with his GC to discuss career options post-graduation, and the GC suggests vocational school, because she “knows Carl can never succeed at a post-secondary institution.”

Grade 9: Carl switches GC to the man I’ll also have four years later, who is very supportive. Carl continues to excel in Spanish and History, but also to plummet in math and science. He is signed up for tutoring for both subjects, but his science grade still does not improve. Mom visits with his teacher who tells her that Carl is inattentive and does not participate actively in class, so she will not raise his grade. Mom states that Carl has ADD (which is of course already on the teacher’s confidential list). The teacher responds readily, “So tell him to pay attention” as if all Carl needed was some discipline to overcome this neurological disorder.

10th grade: Carl is switched into a slower-paced but still regents level math class, and his grades improve. He passes all his regents exams, even achieving mastery in Spanish and Social Studies. He joins the Spanish club, attends Driver’s ed, and gets his first job washing tables at Burger King.

11th grade: Finally a positive GC meeting. The GC encourages Mom to send Carl away to college, but she’s hesitant because his self-care is very poor. Although they work on these skills, by the time the year ends, Mom is still convinced Carl cannot go away to school, so they send inquiry forms to all the local schools. Carl passes his Math regents and signs up for the Spanish AP.

12th grade: Carl is accepted to a local state school, and decides to study computer science. He passes the Spanish AP, passes his math class (with the help of a tutor), and is able to graduate with a Regents diploma and an 86.4 average. He is in the top 1/4 of his graduating class of 600. He is also promoted to Cashier at Burger King, meets his first girlfriend, and receives his driver’s lisence. After years of struggle and hard work, Carl has proved all his nay-sayers wrong.

But college awaits.

Carl: the elementary school years

Given Carl’s recent success, you might assume that school had always been a breeze for him, which would be undeniably false. I thought I would supply you with a bit of a backstory on my brother’s schoolyears.

Preschool: Two months into Preschool, my mom gets a call from Carl’s teachers, informing her that Carl is verbally harassing the other students. When my mom points out Carl isn’t speaking, they both realize the teacher has confused my brother with another kid in the class, and probably has no idea which one of the 30 students Carl is.

Kindergarten: Carl refuses to speak for the first couple months, though he is now talking at home. The school wants to put him in a Special Ed class, but the only special ed. class available is children with no speech who are still in diapers and learn no academics. My mom insists he remains mainstreamed and recieves the “expert lecture”.

First grade: Carl’s first year goes poorly. He’s tiny and behind, so my parents decide to keep him behind. His second 1st grade teacher is wonderful. Carl learns to read and begins to meet friends. During this time his 504 kicks in, and he begins to receive OT, PT, Speech, and Resource Room in school.

Second Grade: No change.

Third grade: Carl seems to be doing okay in school. His math is far behind, but his reading is right on par. One day Mom gets an enraged call from his teacher. It turns out Carl is raising his hand to ask to use the bathroom, and in this class students simply take the pass and go. Due to Carl’s unwillingness to change this bathroom routine, he and the teacher do not get along during the school year.

Fourth Grade: Carl’s academics are average, but he still plummets out in math. One day, when playing at a neighbor’s house, the boys begin to throw balls at Carl. Carl informs the mom that he “just wants it to end,” meaning the ball-throwing. She takes it to mean his life, and calls the school. A psychologist is added to the list of services Carl is receiving.

Fifth grade: Carl is taken to an eye doctor after the nurse determines that he memorized the eye chart and they could not get an accurate reading. It turns out that Carl has very poor vision and is given glasses. His grades begin to improve.

Sixth grade: Mom gets a call one month into the year that Carl has yet to turn in any homework. My mom thinks this is ludicrous because she watches and helps him do his homework each night. It turns out that Carl sits in the very front row of the class, and so when the homework pile gets passed up to be handed in, he forgets to also add his to the pile. His math ability begins to increase due to an excellent remedial math teacher. The teacher suggests that Carl’s main problem seems to be in his attentional abilities, which are far less then would be expected at his age. Carl is seen by a psychiatrist and diagnosed with ADD. He begins to take Ritalin, and his grades reach the B+ level. My mom’s suspicions that Carl’s brightness was being masked by other conditions are confirmed.

Tomorrow, I will post the second half.

Special Siblings and the “Savior Syndrome”

It’s late afternoon and I’m in middle school. I’m camped out outside the school, a few yards over from the smokers, with a girl who will serve as my confidant for the next few weeks. She is the first person to whom I let the bottle cap burst, the first person who ever gets to hear the stories of my father’s alcoholism and drug abuse, of my brother’s disabilities, of my mom’s inability to hold it all together. She’s the first friend I cry in front of, the first to ever know that my life isn’t as wonderful as I try to make it appear. She listens to my stories with a knowing look in her eyes, nodding at all the right places, and releasing those sympathetic sounds I still haven’t quite learned to imitate. And then she says, “Cale, you know what your problem is? You have Savior Syndrome.”

For kids who grow up with an older sibling with special needs, “Savior Syndrome” is something we are infinitely familiar with. It’s also seen in kids who come from homes where drug abuse or alcoholism is a problem in either the parents or an older sibling.

Savior Syndrome is the notion that you have a responsibility to be absolutely perfect, to be the ideal glue that will hold your family together. It’s the idea that your parents are so busy attending to the “important issue” whether a disability or addiction, that you need to ensure they have no cause to worry about you. It necessitates straight A’s, a talent your parents can boast about, and plastered grinning smile. Having Savior Syndrome means never lashing out against your parents or sibling, never trying drugs or alcohol, never getting in trouble in school. If you slip up, the facade cracks, and the world can see the dysfunction that characterizes your family.

Savior Syndrome carries with it a great deal of stress, and a ton of self-blame. If there’s a fight in your family, you try to figure out how you messed up, even if there isn’t a remote connection between your actions and the argument. If you ever do miss up (get a B on an exam, be held for detention, talk back to your parents), there is the crashing weight of knowing you failed, and you did exactly what you shouldn’t have: you made your parents more stressed then they already were.

Savior Syndrome cannot last forever. Eventually, the fantasy is stripped away, and the truth is laid bare. There tends to be one of four results, and they usually occur during middle/high school:

1)Mental Illness, most likely depression or anxiety. All the stress of all those years builds and builds until it has nowhere to go but out. Self-injury is highly likely.

2) Suicide: You failed. You had one life’s purpose: to save your family and you just couldn’t do it. Why bother going on?

3) Alcoholism/Drug Abuse: You’re stressed. Life is just to hard to cope with on your own. You could use a little bit of help, and if Jack can get you through the night, who is anyone else to criticize. But you soon need more and more to get you through the day, and you become one of the addicted.

4) Delinquent Behavior: You spent your childhood being perfect. Never demanding extra attention, never giving anyone cause for alarm. And it didn’t work. It left you drained and your family was just as problematic as ever. Now you’ve spent enough time trying to be wonderful, it’s your turn to have some fun. That is, until you get caught and wind yourself up in juvie court.

The devastating effects of Savior Syndrome can be overcome, but the mindset will remain long after the symptoms of rebellion have passed. You’ll still suppress all the emotions you want to let out but know you shouldn’t. You’ll still think, “I need to be the responsible sibling; I need to be the one who gets it right.” Even knowing you can’t be your family’s salvation, you know you still have to try.

I think Savior Syndrome can’t be truly prevented; it’s a burden we bring upon ourselves. But the effects can be mitigated. Some things which might reduce the effect on your child: -

• Remind them they don’t need to be perfect, that you’ll love them just as much if they get straight B’s on their report card as Straight A’s.
• Let them know they can tell you when they are feeling frustrated or overwhelmed without having to fear backlash or punishment.
• Talk to them about their feeling that they need to be “the good son”. Let them know that you’re not putting that sort of pressure on them, and they shouldn’t put that sort of pressure on themselves.
• Watch for warning signs that your child is feeling overwhelmed. Remember that they have become experts at the art of suppression, and the signs will be subtle. If necessary, find a professional (counselor, therapist, psychologist, reverend) who your child can talk to in times of trouble.

Savior Syndrome comes with the territory of being a sibling of a child with special needs. But it doesn’t need to define your child, and it doesn’t need to destroy their lives. But as parents, it is your responsibility to intervene before it’s too late.

Time-Check

It’s Sunday night. I knock and enter Carl’s room:

• Hey Carl, let’s have lunch tomorrow at 12:30.
• No.
• No to lunch or no to 12:30?
• (Exhausted sigh). I don’t get home from school until 11:57. I take 2 minutes to get from the door to my PS3. I have to play for exactly 30 minutes. Then it takes me 2 minutes to get from the PS3 to the door. We couldn’t possibly leave until at least 12:31. And what if I have to use the bathroom? So perhaps 12:33.
• Carl, 12:30 or 12:33, what’s the difference?
• 180 seconds.

Carl likes time. He cleans his room from 2:19 to 2:39 exactly. He showers from 6:03 to 6:08 (yes, I have heard he is quite malodorous). He goes to bed at 1:11 AM. It was a behavior that started around when he graduated high school, and has continued since.

I will admit, I do plan out my showers to the minute. But for me, I don’t mind adjusting my plans by as much as fifteen minutes. But for Carl, every second counts.

I imagine for him it is a way of organizing the world in a way that has always been unpredictable to him. Friends he would schedule a week in advance would call 1/2 an hour before they were set to come over to let him know they found someone better to hang with (not that they ever said it in those words). For my deadbeat dad, scheduling a day to hang is a sure way to guarantee he won’t be free on that day. So he’s learned he cannot depend on people. But he can depend on time.

So if he wants to go out to eat at 12:33 instead of 12:30, I suppose I can oblige (especially if he pays ).

Left, Left, Left right left

I have a ritual which I do each night once I climb into bed. I lay face up and figure out which side is left and which is right. Then I lay face down and do the same. Then I cross my legs while face up and identify which is right and left, and then cross my legs while face down. This helps for a number of reasons. It gives my brain the signal that it’s time for sleep. It helps to orient me in space. And, most importantly, it helps me practice “right” and “left.”

Seventeen years after the concept was first introduced, I should have the notion down. For everyone else the knowledge seems to come naturally, for me, I have to conciously think it out, make the L, identify that that is the left side. There is a process to knowing, rather than an instinct.

This became a particular issue when I attempted to take Tae-Kwon-Do my freshman year. In elementary and middle school I had been in Karate and done quite well, winning trophies in several tournaments. So I couldn’t figure out why Tae-Kwon-Do was so impossible for me. After a bit of contemplation, I remembered that karate was taught by instructors who stood with their backs to us, so I could always copy the moves until muscle memory took hold. In Tae-Know-Do, we stood in a circle around the instructor, so I was always in a different orientation relative to him. As a result, I had to first determine which arm he was moving and in what direction, and then figure out how to do the same with my own body. Then he’d turn and I’d gain a new perspective and trying to combine the data would totally throw me off. After three weeks, I dropped the class.

I wonder if this is an Aspie trait or simply an idiosyncracy of mine. Any thoughts?

Memorial Missive or Cale vs. fireworks

Memorial Day, here in the US, is a way we honor veterans who died in combat. It is a day of parades, barbecues, gallavanting, and unfortunately, for those with sensory defensiveness or PTSD, fireworks.

Loud, obnoxious, and in my state, illegal, these works of the devil are the bane of my existence, and the reason July 4th and Memorial Day are my least favorite days of the year.

They manage to grate on several levels. They are excepti0nally loud. They are not set off in a regular pattern, and are thus unpredictable. They continue until late into the night, interrupting precious sleep cycles. And, worst of all, they are ubiquitous; there is no place you can hide to escape them.

Over the years, I’ve developed a few techniques to escape their horror:

• hide out in a friends cement basement (it mutes the sound)
• Wear noise-cancelling headphones
• Play loud but predictable music to counter the fireworks (Josh Groban is an excellent choice)
• Self-soothe by rocking gently

By combining these four tactics, days with fireworks become almost bearable.

But, if you are considering setting off these evil inventions this year, pause for a second to consider the sensory defensives in your area, and watch the televised version instead.