Tourette’s Awareness for Parents of Autistic Children

Tourette's Definition

Tourette’s Awareness

Why should parents be aware of Tourette’s syndrome?

Two essential reasons come to mind.

First, TS is not as uncommon as once believed. Once considered a rare neurological condition, TS exists in 1% of the population. The incidence among autistic individuals is higher. Statements from autistic adults and families report that 22%-30% of persons on the autism spectrum have a tic disorder or Tourette’s syndrome along with autism.

Second, tics are managed much differently than behaviors.

Intuitive interventions like discussing consequences, reward charts, and time outs make tics worse. Learning to recognize tics will help you to manage behavior and pick your battles better.

Symptoms Present for One Year

Tourette’s syndrome is defined by motor and vocal (phonic) tics present for more than a year. This simple definition surprised me, as did findings that tics themselves are quite common in the general population–20% of all children have them. This is why duration matters.  A few weeks worth of tics is a transient episode, but a year of tics qualifies a person for a Tourette’s diagnosis.

Simple Motor Tics

Motor Tics

Motor tics are bursts of abrupt, irregular movements. Tics differ from the rhythmic, self-soothing stereotypies (“stims”) of autism. Stims are soothers– they involve either the whole or both sides of the body (flapping, rocking).

Tics are eruptions of muscular activity activated by differences in brain chemistry and structure–if a stim is the gentle rolling of ocean waves, a tic is a sudden burst of rain.

Simple Vocal Tics

Vocal Tics

Vocal (phonic) tics are non-rhythmic mouth, throat and nasal sounds. Throat clearing, a word or even a phrase can be a vocal tic. A handful of throat clearings might be indicative of a cold. Six hours of purposeless throat clearing is likely a tic. Simple vocal and motor tics are considered to be manifestations of the same neurology since both involve discrete muscle groups.

Coprolalia Definition

Coprolalia and Coprophenomena

Coprophenomena is an umbrella term for socially unacceptable tics. Imagine that the brain has a control center for suppressing disturbing or inappropriate thoughts. Coprophenomena occurs when this control center not only fails to suppress the thought, but actually forces the thought to be yelled or acted out.

These actions are impulses, not premeditated acts. A person may feel compelled to write the words “stupid” and “farts” on paper, but they do not write hate-filled personal rants. On a Tourettey day, my son might dump liquid soap into the bathroom sink or squash tomatoes in the veggie basket.

Preventing these tics is often as simple as removing temptation–store the liquid soap under the sink and cover the tomatoes with a dishtowel. I also do not lecture/punish. My son knows not to squash tomatoes. On good days, I could line the floor with juicy tomatoes and he would step right over them.

Waxing and Waning of TS

Waxing and Waning of Symptoms

A perplexing component of TS is the waxing and waning of symptoms. Not only do episodes of tics come and go, but predominant tics change as well.

In our home, a week or two of typical motor activity follows a flurry of tics. After another quiet spell, tics resurface, transformed. Tourette’s syndrome is unceasingly dynamic.  A spell of compulsive touching, clacking, and head rolling morphs into something new, perhaps boozle hinking, poking, or cries of “You farted!”

When to see a doctor

When to See a Doctor

This unstable, changeable pattern of behavior exasperated and exhausted me. I collected and analyzed notebooks of data, but found no consistent reasons for his behavior changes.  Until we realized it was neurological.

If you find yourself struggling with behaviors that do not reliably respond to your behavioral plans, consult a pediatrician or neurologist. Compose a list of your experiences and ask if autism alone can explain the behavior your family is experiencing.

Tourette’s syndrome, OCD, and ADHD can all occur with autism and present unique needs.  Symptoms even overlap and mimic autism, especially Tourette’s and OCD.  Our biggest problem was recognizing that our son’s Tourette’s syndrome was separate from autism.

If you have questions, please call the Tourette’s Syndrome Association. They can give you a list of physician referrals and ease your concerns.  I owe my peace of mind to them.

The More You Know

References and Resources

Waiting for the Storm

Waiting

Like Sherlock Holmes is invigorated by a good mystery, I am invigorated by a good storm.

In the five years we have lived here, the east coast has entertained us with turbulent weather. We endured two week-long power outages caused by massive icestorms. Hurricane Irene rattled our windowss and and at least four blizzards have humbled us.

Quite a change from New Mexico’s hazy, stingy sandstorms.

We are prepared. An army of batteries organized by size  sits next to our flashlights. Our generator has been tested and overhauled by my husband. Boxes of canned food wait to be refused by my son.

Best wishes to my fellow East Coasters.

 

Here are some remembrances from storms past:

Ham and Candle Party Hurricapocalypse!
How I Prepared My Asperger’s Child For Hurricane Irene Irene’s Party


A final note. I was exceptionally stressed out last week and I am still catching up on all the lovely comments. I appreciate your visits and read everything you share. I will be caught up soon. Thank you for your understanding!

A Trip to the Emergency Room

Thankful
When I heard my son shriek in the backyard, I knew he took a spill in the wheelbarrow. Papa gives him rides and T had not met his monthly bruise quota. I ambled out back expecting to give hugs and sprays of Bactine.

The seriousness of the situation escaped me. Papa cradled Tyoma, holding him at a strange angle. I thought this odd, and did not recognize panic until I looked into my husband’s eyes.

The wheelbarrow had flipped, dumping its weight plus Papa’s on top of Tyoma. Tyoma turned to me, screaming. I stood aghast as he spat out mouthful after mouthful of blood. I grabbed some towels and met them at the car. We rushed Tyoma to the nearest emergency room.

I shook the whole ride. Tyoma shrieked nonstop, while Papa soothed with absolute calmness.

A triage nurse determined T had lacerations on his lips and gums. He had no obvious broken bones or concussion, and his bleeding had slowed. I reiterated how much he had  bled at home. He must have lost a cupful before my eyes. The nurse reassured us that facial wounds bleed a great deal and not to worry. She gave T a popsicle and juice, asking us to wait for the doctor.

Keeping T occupied until the doctor arrived was easier than expected. He quit screaming, “I need a doctor, I’m going to die!!!” although he wailed when he saw himself in the mirror. He finally cuddled on my lap and listened to stories.

The doctor told us T had bit a thumb-sized hole in is upper right lip, but it would heal easily. More problematic was the injury that caused his profuse bleeding. Tyoma’s top lip under his nose had been torn lose from the gums.

A debate over getting stitches arose. Stitches would mean an all-nighter at a different hospital with a pediatric facial reconstruction surgeon. Tyoma’s injury was serious enough that stitches were recommended, but not so critical that they were mandatory.

Our ER physician called all over town to see if anyone could help us sooner. He quickly perceived that Tyoma would spend the balance of the night poking at his injury while hopping around the emergency ward. Egor and I concocted activities for T as we waited. Every patient in the ER was privy to our pursuits. I hope they enjoyed knowing their room numbers and the height of every letter on the eye chart.

No specialist could be reached, so we decided to take Tyoma home. Instructions abounded. No school. Liquid diet. See your pediatrician. No picking at his lip (ha!). No jumping (hahahaha!). And so on.

Despite the excitement, T conked out immediately. I spent the night next to him, grateful we installed a queen-sized bed in his room.

Tyoma slept well. Papa and I did not. I brooded over the accident, replaying horrifying alternate scenarios till morning. Papa ached from the fall. The next day he confided that he thought he was having a heart attack in the ER. His pain turned out to be an Idaho-shaped bruise over his chest and shoulders.

The next morning, Tyoma resembled the loser of a lengthy, contentious boxing match. By noon he recovered enough for a few half-hearted hops and by dinnertime he tired of popsicles, juice, and jello.

school

After Tyoma fell asleep, I washed the accident laundry. The reddening water gripped me; each agitation deepened the hue. I doubled the detergent, and watched pink foam froth. Rosy suds churned like whip cream, obscuring the dark water beneath.

I contemplated water and suds, how the water and foam are a part of each other, despite their differing appearances. My son’s cast off blood would be rinsed away to rejoin the earth. His atoms fueled life before him and will continue their impersonal work after him.

Life is fleeting and frail. I am so thankful for the time I have on earth with my family.

Tyoma woke up the next day, full of hops and strange observations. I gave him a long, tight hug.

The Mystery of the Thinning Hair

Countessa with Squid by Omar Rayyan
Countessa with Squid by Omar Rayyan.

Ah, to possess tentacle hair!

With my luck, one side would still be limp and scraggly. Could I comb my tentacles over to one side to cover up? No. This is my latest strategy, however.

I part my hair to the side. I’ve worn it that way for years. When my bangs misadjust themselves, a toss of my head rearranges them. What people who don’t live with me miss, is that I toss my head interminably throughout the day.

The frequency and intensity of head tossing is directly related to two things—anxiety of course, and the length of my bangs.  To keep my head tossing muscles from becoming too prominent and glossy, I schedule bimestral hair appointments.

Our family stylist, Kira, is a blessing. She has a brother with Asperger’s, so she is very sensitive to Tyoma and me.  She entertains and soothes Tyoma with the flair of a favorite aunt.  On a particularly twitchy morning, she hauled out the big book of hair colors for me to peruse. She knew I would savor the nylon expanse of color.

I feel so comfortable with Kira, I shared my worry over the problematic right side of my head.

My hair has a fine, European texture.  One woman told me I had “Disney Princess” hair. This is the most laughable thing I ever heard.  My hair is soft and silky—but it is distributed in a bizarre manner.

The back of my head is a tropical tangle and the left side is modestly dense. The right side, however, is thinning badly. It isn’t quite Yoda-ish, but at the rate my hair is thinning, I am concerned.

Kira suggested I might be doing something specific to thin my hair. Do I sleep always on the same side? No.  Do I twist or tug at my hair? No.

Trichotillomaniacs pepper our family, so I took note. I might pursue a pimple with lusty gusto, but I don’t pull out my hair. We decide to style my hair parted to the left to normalize my appearance.

As she finishes my ‘do, she encouraged me. “It will occur to you, Lori. One moment you will be doing something…” She paused and tipped her head to the side. Dramatically she swooped her fingers through her hair. “And you will realize what is thinning your hair.”

In an instant, I realized– that is what I do!  I am a compulsive hair-raker.  I must rake my hands through the right side of my hair three dozen times a day. I never connected my quirk with hair loss. I don’t fuss with the left side because I am right-handed. I would not reach across my field of vision.

Kira solved a grand mystery. I’ve had periodic thinning for years. Under stress, I rake manically. Raking is a tic of sorts, a nervous re-adjustment.

Why would anybody rake their hair into such a state? Well, you would pull up a pair of sinking baggy pants. You notice the sensation, and hike up your trousers. If the sensation is too annoying, you get a new pants or a belt. I am stuck with my scalp, so I might consider a headband.

Ha.  I reckon I’d wind up with a little bald ring circumnavigating my head, so perhaps not.

Heaven help me, I might need to use some self-control!

Portrait is “Countessa with Squid” by the incredible Omar Rayyan.

What’s Your Number?

freereport

Wednesday, my son was sick and irritable with the latest iteration of stomach bug. Much like my father, Tyoma reacts idiosyncratically to stomach troubles. Rarely does nausea touch him. But when it does, it is time for TV.

We watched the Mickey Mouse Clubhouse all day. That was more TV than we consume in a week.

At the end of a day, sleep deprived and filled to the brim with Disney propaganda, Tyoma requested computer time. The soothing sameness of the online metronome always quiets him.

Within minutes, Tyoma’s hyper focus kicked in. His fascination was with an online stopwatch. He loves countdowns and timers. Our YouTube site has the funkiest countdown playlist you’ve ever seen.

Anyway, I sit nearby on my laptop to prevent unauthorized Google image searches.  Last Halloween, he snuck in and typed “bad hello kitty.” Even with safe search on, I had some explaining to do.

After ten minutes of countdowns, he flung the chair back from the computer and this conversation took place:

T: “Mama! Mama! I need something!  Right away! Mama!”

Me: “What Tyoma?”

T: (tearful) “I have to have it! Mama, please!!”

I turned to look at him.

Me: “What is it, Tyoma?”

T:  (hysterical) “My free credit report for 2012! I have to have it!! Let me fill out the form! I have to have it! Please! I need to know my number! My credit score! For 2012!”

Free credit report? Good grief.

I noticed that his online stopwatch has a Free Credit Report banner, with inviting, empty fields. Tyoma loves to fill out forms but is forbidden to do so. Last September he went on a form filling frenzy which infected every inch of our computer for three weeks.

I know how this conversation will go. Tyoma was on the verge of tears, because knowing his credit score was a life and death matter.

For once, I resisted the temptation to explain to him the complexities of modern life and credit reports. This was hard for me. As compelled as he is to fill out the form and see the numbers pertaining to his life, I am compelled to deliver a lengthy lecture and tell him the truth. In fact, I slip into lecture mode ¾ of the time.

But not today.

Looking at him, tears in his eyes, tense and frantic, we speak:

Me:  “Okay. But there is a problem”

T: “Problem?”

Me: “Yes. You need to get  a W-2 form before you can have a free credit report.”

T: “Oh.”

Miraculously, he was satisfied.

T: “So when I get my W-2 I can have a free credit report?”

Me: “Sure.”

T: “Okay!”

Meltdown averted.

This is one of my prouder parenting moments.

I am proud, not only for avoiding a meltdown, but for being able to put aside my own immediate agenda.  I must work diligently to corral that tiny professor in my head, who is always seeking an opportunity to take the stage.

I must also remember that meltdowns are not logical-reasonable lesson teaching moments. Meltdowns are all about shifting focus from the frustrating to the doable.