From Autism and Tourette’s

Compulsive Behavior: A Plan For Us All

Summer Curses

Tourette’s season is here.

The hottest, heaviest weeks of the year amplify tics to unprecedented levels. Clouds of stupids, shut ups, and other unmentionables thicken the air.

Such is the pressure to expel offending words, my son must do more than speak them: he must type them, scrawl them, and even print them out on our label-maker.

We are cool with this.

Tics are neurological. Time-outs, scolding, and other intuitive interventions not only don’t work, they actually exacerbate tics. To decriminalize forbidden words is to diminish their frequency.

So, Tyoma can sing a thousand foul verses and print innumerable rude remarks. We blithely ignore him.

Some tics are easier to disregard than others. For example, I cannot bear touching tics. On long rainy afternoons I find myself entertaining a child compelled to touch me a hundred times an hour.  Last year, he hinked my boozle, this year he’s punching me.

Little Punchies

I don’t mean painful, aggressive punches, I mean soft little fist taps, 10,000 times a day. We call them “little punchies.”

As accepting as I am to Tyoma’s neurology, I struggle with this particular tic. Unexpected touch sets off a four alarm fire in my head. I jerk, jolt, and avert my own impulses to misbehave. This involuntary dramatic, negative response ensured a plethora of future little punchies. We were stuck in a loop.

Self-pity was my first choice. Summer is inherently miserable for me, so resigning myself to punchies with a mournful sigh seemed the way to go. Within a few days, little punchie nightmares took over my sleeping world. Without a reprieve from insistent little fist taps, I woke frazzled and depressed to the core.

I needed to take action. I needed to find a way to de-criminalize punchies since ignoring them was not working.

The solution was so obvious; I can’t believe I didn’t think of it.

One day as I picked Tyoma up from swimming, our respite worker Danielle asked, “Have you ever considered getting him a punching bag?”

No, actually, I hadn’t. The elegance of this solution made me want to shout “D’oh!” to the heavens.

The next day, we picked up a mixed martial arts bop bag. The company who manufactures the bag could never appreciate the wonderful favor they did for us by emblazoning it with numbered strike zones. More attractive than my backside or torso, the target-styled numbers invited infinite little punchies (and some big punchies, too!).

Little Punchies

Our new bop bag accomplished two delightful things. First, it gave me control over the little punchies, so I did not spend my afternoons engulfed in adrenal hyper-vigilance.  Second, it gave Tyoma an outlet for his prodigious energy.   Any suggested number sequence redirected volleys of dopamine-fueled punchies to “Bopping Billy.” Hooray!

As I reflected on the success of Danielle’s suggestion, I recognized the existential issue of little punchies. Pointing my son to a punching bag is no different from me directing myself to a canvas or notebook. Our family experience of Asperger’s and Tourette’s includes such a superfluity of mental and physical energy that we must continually channel the excess or drown in the overflow. To master ourselves,  we must uncover new outlets, so energies blossom outward in useful, healthy ways.

Summer Break Projects with #Autism and #Tourettes

Summer Break

Summer break lurks. I am anxious in advance.

The unstructured days of summer challenge my son and me. We crave stimulation, yet our uneven executive skills leave us either aimless and bored or agitated and disturbed. Without advanced and detailed planning, summer will be miserable.

Over past school breaks and summers, I learned how to make time pass more agreeably.  I hope what brings us, a mother and child on the autism spectrum, brings you a full and happy summer.

stamps

Fun is Subjective

The key to a successful project is organization. No, I don’t mean being organized ahead of time (though it helps). The key is to let your little one organize! Do you remember when your child loved lining up toys? This is the exact same thing.  Fun is subjective. Smeary blobs of paint are yucky. Tidy rows of crayons are delightful.  Art can be chaotic but giving your child control over their supplies not only reduces anxiety, it is a fun activity itself.

Above, my son arranged his ink pads in a pleasing fashion. He similarly ordered his rubber stamps and ran off to get the label maker to identify the stations where the ink, stamps, and paper will be. His process took 45 minutes. On this day he only stamped for five minutes, but on others we spend hours stamping.

colors

Accommodate for Needs

Tyoma and I love colors and patterns. Potholder making is a favorite activity, but it has pitfalls. Looms require both a fleetness of fingers and a tedium tolerance that eludes most six-year-old boys. We tackle the loom together. To nix anxiety, we list Tyoma Jobs and Mama Jobs.

Clarifying who does what and when visually is essential to all our activities. T sorts the colors into piles, selects a pattern, hands me loops, and straightens each row I weave. I set up the loom and do the actual weaving.

This is an excellent activity for a young touretter. I wove while he hopped, chirped, and bounded. My hyperactive son shared in the process of making something and got the movement his body craves.

Anticipate and Redirect

Tie Dyed TWhen I told my mom that Tyoma and I made tie-dyed shirts, she gasped. When I told her we did it at the kitchen table instead of outdoors, she gasped even louder.  We used a delightful kit with dye squeeze bottles instead of buckets. Not only was the tie-dye easy, it was tidy!

Imaginative and impulsive brains may make art dazzling, but eight ounces of concentrated dye in a squeeze bottle is a terrible temptation.  As I shook up the pink dye, our kitty strolled by. I was seized by an almost irresistible urge to squirt her with dye. I resisted and put kitty away, covering visible carpet and furniture with blankets and plastic.

Anticipating potential catastrophes is easy because I think like my son. If you are not pre-wired with autism, imagine the biggest, most indelible mess and plan accordingly. Better yet, know what to do at the cusp of disaster: redirect.

Midway through our second shirt, Tyoma confessed to a compulsion to “make a fountain with the green dye.” I nodded, asked for the dye, and suggested he find a squishy ball. We set the ball on the table for “compulsive squishing.”

Sensory options like squeeze toys or something unexpected (such as making a green fountain in the sink) are great redirectors. Composure is essential as well. Emotion stokes compulsion fires and ignites meltdowns. Say, my son flipped over a jar of apple cider on the counter, I would serenely ask for towels and we clean up like it’s no big deal. Parental irritation and potential meltdown avoided.  It’s neurology, not personal!

Making Applesauce

Final Words

My son’s growing mind needs stimulation—but not too much!  Every successful activity is a discrete dose of the right stimulation at the right time. I enjoy our special projects but they exhaust me. I cut myself liberal slack–especially since I am on the autism spectrum. I don’t always have the abundant mental reserves to introduce new activities, so we tackle new projects once a week.

Whether or not you are on the spectrum, your child will still need structure, accommodations and something enjoyable in every project. I wish you luck as you embark on your summer vacation and would love to hear what activities are successful (and why!) in your household.

 

 

Entertaining Others With Your Aspie Gifts
Should I Indulge My Asperger Child?
Embrace Neurodiversity!
Excitability, Asperger’s and Tadpoles

The Power of Negative Suggestion

negative

Our household has the flu because our son never forgets a prohibited act.

Two weeks ago, we discussed his impending annual physical. Since his pediatrician’s waiting room is divided into “sick” and “well” areas, he became preoccupied with the specifics of each designation.

He quizzed me about the admittance criteria for each half of the office.

T: “Mama, if you have diarrhea, what side of the office do you go to?”

M: “The sick side.”

T: “What if you have only a little bit of diarrhea?”

M: “Then you don’t go to the doctor.”

T: “What percent diarrhea do you have to have to go to the doctor?”

M: “Uhh, 60%.”

T: “How much diarrhea is 60%? Do you measure by time on the potty or cupfuls?”

And so on.

Levels and percentages help Tyoma process his anxiety over doctor visits.  A grid, a map of steps and predictions make the experience palatable.  I answered question after question as he scribbled data and drew boxes.

Nevertheless, after thirty minutes of diarrhea, influenza, and strep throat percentages, I interrupted:

“Look, Tyoma, going to the doctor’s office is safe. The children on the well side are safe; the children on the sick side are safe. Unless you lick the stair railings, doorknobs and light switches, you won’t get sick. It will be okay.”

This silenced him. His marker hung in midair as he collected his thoughts. “Okay, Mama. Let’s do GUM (gross motor)!”

Tyoma’s physical was the first appointment of the day. We arrived ten minutes early and since the office was not open yet, we loitered near the stairwell. Tyoma jabbered about his schedule breathlessly, trouncing up and down the stairs. A moment of silence descended upon us. My gaze drifted lovingly to him, admiring his composure as he waited.

Suddenly, as if gripped by a paroxysm, he mashed his nose to the stair railing and gave it a long, slurpy lick. I gasped. Without looking at me, he took three sideways hops and repeated the action on the other rail.

Flabbergasted, I scrambled for the proper reaction.

I know my son. He remembered last week’s conversation and could not help himself.

Lectures and anger do not work—in fact, they will guarantee that he will need a muzzle for future doctor’s office visits. Anxiety and negative reinforcement escalate compulsions. I ignored the behavior and asked him to calculate his “wellness level percentage.” Invigorated, he quoted wellness levels for several minutes.

At 8:20, a nurse let us in the lobby. Tyoma’s eyes darted to the nearest light switch. Envisioning the nurse’s horror over an attack of switch slurping, I touched his shoulder. It broke the compulsive spell. He hopped to the sign in sheet and fondled the poinsettia topped pens instead.

The preposterousness of Tyoma’s’ behavior shocks and scandalizes, yet it possesses a certain purity. Negative thoughts preoccupy many of us.  Some brains are wired more anxiously, more obsessively, more prone to giddy loops of negative “what-ifs.”  No parent stuffed me full of anxiety; I popped out of the womb with an enduring cry of fretfulness.

Persistent negative thoughts entice me into spells of self-absorption. Ironically, I fight fire with fire, redirecting my hyper-focus to things I love–art, writing, organizing.   The same applies to my son.

We share the dizzy downhill ride of bad thoughts without brakes. Tyoma shows me that I have built-in brakes I never considered and brakes I have learned to apply over the years.

Be grateful for the privilege of control. Point those who struggle in other, happier directions so they can twist the worry back on itself. Even a gentle touch can alter one’s course.

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

#Tourettes Syndrome Plus #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, Tyoma has exhibited strange and inconsistent behaviors that did not respond to conventional or intuitive interventions.

At times T 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 Tyoma’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, Tyoma 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 Tyoma’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” Tyoma’s TS.  Tourette’s is as much of him as autism. We will focus on solutions and insights to promote quality of life for Tyoma 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