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

Tourette’s Syndrome and Autism: How Diagnosis Helped Us

Change

Change can be an enemy. Change disorganizes, disrupts and confuses.  Change can also refresh and relieve.

For over a year, Liev has exhibited strange and inconsistent behaviors that did not respond to conventional or intuitive interventions.

At times Liev is super-charged– as if he inhales pure electricity and discharges it in torrents of motion and sound.   He hops, skips, twists, shrugs and nods. Even in sleep his body twitches.  He snorts, grunts, clacks, chomps and spouts random words.

In our household, this seems rather normal.  Papa and I exhibit motor idiosyncrasies: I am seized by bursts of frenzied finger snapping while Papa smooths phantom wrinkles out of his trousers.

Moreover, our house is rarely quiet (despite the name of my blog). Someone is always making noise. My husband trains his voice with strange and exciting vocal exercises, which I echo with delight.  Orchestras of self-soothing sounds emerge from me as I cook, clean, or fold laundry.

Riot Week in the House
More like “Riot Week in the House.”

It was natural to assume autism explained all of Liev’s energy and sound.  We, his parents, brim with energy and sound ourselves.

When the cursing began and did not end, we knew something was different. This final clue sent us seeking answers. Now we have some and change is afoot.

November 9, Liev was diagnosed with Tourette’s syndrome (TS). His motor and phonic tics are classic indicators.  Cursing—the Tourette’s symptom the media hypes—is actually uncommon. Only 8% of Touretters curse involuntarily.

Maybe not every mother says, “Yay! It’s Tourette’s,” but I feel like it.  I fancy baking my son a Welcome Farty cake to celebrate.

Welcome Farty!

By identifying TS, our family’s quality of life improves—especially Liev’s.  Neurological conditions like Tourette’s require unique and specific behavior management plans.  TS tics are not the same as garden-variety mischief.

In fact, we used many TS behavior strategies intuitively over the past year. When I learned that ignoring tics relieves their severity, I was buoyed.  I can dismiss fears of our parenting creating unrelenting cursing and shenanigans.

We do not intend to “beat” or “defeat” Liev’s TS.  Tourette’s is as much of him as autism. We will focus on solutions and insights to promote quality of life for Liev and our family.

Come to think of it, this is not as much change as I first expected!

Bad Language: Summer of the Swearing Schoolboy

Bad Language: Our Household History

Compulsive Pestering and My Asperger’s Child

The Monkey-Shower Dream

Could It be Tourette’s Syndrome?

Maintaining My Poise

A few weeks into summer vacation, Liev came home from an afternoon of swimming with a new word: Fart.

Coincident with this, I was no longer “Mama.”

My son christened me “Farty.”

I should have ignored him, knowing attention feeds certain behaviors–but I love to lecture. I preached appropriateness and cultural norms. I discussed disrespect and hurt feelings. I diagrammed charts to organize his behavior.

Liev attended solemnly and gave every indication of having learned his lesson. Victorious, I gave myself copious pats on the back–my child would never call me “Farty” again.

The next day at breakfast, Liev blurted out, “Get me some juice, Farty!” I reeled, dumbstruck. He shook his head, “Uh-uhn, Mama.  Mama, may I please have some juice?” I examined his little face for mischief. None. I complimented his manners and made a mental note.

Three days later, the stupids arrived. Mostly, it was just the word “stupid” by itself, but not always. I heard a few “Stupid Mamas” and plenty of “Stupid Farties”.  Appalled, I wondered where this came from.

My encyclopedia of behavioral interventions failed to eradicate offensive words. Recalling his boozle hinking episodes, I decided to ignore him. This choice reduced both our anxiety, yet I was still awash in a sea of stupids.

Midsummer brought the shut ups. No amount of lecturing, positive reinforcement, or consequences helped. In fact, everything I did worsened the shut ups. He began shouting “Shut up!” at the TV and computer. He whispered “shut up” to himself as he read. And of course, there was “Shut up, stupid Farty,” addressed to me, or the cat, or Papa.

Ms. Michelle

Bewildered, I scoured forums, took data, and read books. At last, I consulted our respite provider, Michelle.  A blessing from the start, Michelle is a skilled school psychologist, savvy to all things autistic. Many of Liev’s baffling behaviors, she explained, stem from compulsions—irresistible urges.
If a sainted spot in heaven awaits wise and peppy school psychologists, the angels have a berth just for Michelle. Some form of OCD must underpin Liev’s behavior since OCD-specific interventions remedied many behavioral incidents.

OCD should not be a surprise. It thrives in our family.  I take a dash of meds to keep me from repeatedly checking the front door at night.  Nonetheless, after scrutinizing three childhood OCD books, I realized that OCD and autism did not explain our behavioral issues.

Tourette’s syndrome and autism, however,  matched our experiences with uncanny accuracy.

To be continued…

Bad Language: Our Household History

Marriage
I am a child of the seventies.  My generation listened as profanity switched from absurdly scandalous to cutting-edge conversational. My parent embraced the zeitgeist with humor and creativity.

Yet, I live in a home free of rough words.

I do not curse because I married a Russian.

In Russia, women and children never use profanity. To do so would be as taboo as using ethnic slurs in our culture—offensive in the extreme. In seventeen years of marriage, my husband’s worst oath has been “The devil can have this as a gift!”

It took me a month to temper my language around my new husband. A year later, my brain re-wired itself so much that my own mother scandalized me. Seventeen years later, my Mom re-wired her brain for her blushing daughter!

Every household is a miniature culture, with its own customs and prohibitions. Our home honors Russian tradition and my injunction against personal insults.  We do not say “stupid”, “idiot,” or demand someone to “shut up.”

So, this summer, my brows lifted when I overheard Liev’s cartoon du jour, Phineas and Ferb, feature a shut up-stupid shouting match.

I didn’t ban the cartoon outright. He will hear the same words at a playground or at school. At six, Liev seemed ready for a life lesson on bad language.

Heh.

House of Curses

Actually, I was the one who learned a life lesson about bad language.

To be continued…