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.
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.
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 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 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
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.
References and Resources
- Getting Started/Newly Diagnosed From the National Tourette’s Syndrome Association
- Facts About Tourette Syndrome From the CDC
- Tourette Syndrome Fact Sheet From the National Institute of Neurological Disorders and Stroke
- Tourette’s vs Autism Stereotypiesfrom the Tourette’s Syndrome, Now What? website.
- Tics and Tourette syndrome in autism spectrum disorders
- Recognition and Management of Tourette’s Syndrome and Tic Disorders From American Academy for Family Physicians
- Autism Spectrum Disorders: Relevance to Tourette Syndrome, Isabelle Rapin