Tourette Syndrome: Symptoms, Diagnosis and Treatment

Overview

Tourette syndrome (TS) is a neurological condition that causes tics: sudden, repeated movements or sounds that a person does not intend to make. It belongs to a group of tic disorders that affect the developing nervous system. To be diagnosed with TS, a person must have both motor tics and at least one vocal tic for at least a year, with symptoms starting before age 18.

According to the CDC, about 1 in 333 children ages 3 to 17 in the United States has been diagnosed with TS, and studies that include undiagnosed children suggest the true number may be closer to 1 in 162, meaning about half may not be diagnosed. Boys are about three times more likely than girls to be diagnosed, which means girls with tics can be overlooked. TS very often comes with other conditions: about 83% of children with TS have at least one other mental, behavioral or developmental condition, such as ADHD, OCD or anxiety.

Tics usually begin between ages 5 and 10, often in the face and head, and are typically most intense in the early teen years. For many people, tics ease considerably by the late teens or early 20s. TS is not degenerative, and people with TS have a normal life expectancy. Its cause likely involves a mix of genetic and environmental factors rather than a single gene.

Symptoms

Simple motor tics, such as eye blinking, facial grimacing or shoulder shrugging
Simple vocal tics, such as throat clearing or sniffing
Complex motor tics that combine several movements, such as a grimace with a head twist and shoulder shrug
Complex vocal tics, such as repeating words or phrases
Tics that usually start in the head and neck area and may later involve the torso, arms and legs
Co-occurring symptoms of ADHD, OCD or anxiety
Learning difficulties
Sleep difficulties

Diagnosis

Clinical history: a detailed account of tic types, when they started and how they have changed
Diagnostic criteria: both motor and vocal tics present for at least one year, beginning before age 18, and not caused by medication, substances or another medical condition
Observation or video: seeing tics in person or on video helps, since tics may be suppressed during an appointment
Imaging or other tests: not needed for diagnosis, but sometimes used to rule out other conditions
Screening for co-occurring conditions: evaluation for ADHD, OCD, anxiety and learning differences

A neurologist, pediatric neurologist or psychiatrist with tic disorder experience typically makes the diagnosis.

Treatments

Comprehensive Behavioral Intervention for Tics (CBIT): a behavioral therapy that teaches awareness of the urge to tic and a competing response
Alpha-adrenergic agonists: a class of medicines used to reduce tics
Dopamine-blocking medications: such as haloperidol or pimozide, which reduce tics but can have side effects that your doctor will discuss
Treatment of co-occurring conditions: stimulants for ADHD or antidepressants for OCD and anxiety, when appropriate
Deep brain stimulation: a surgical option reserved for severe tics that have not responded to other treatments
School support: accommodations and education for teachers and classmates

Medical Resources

Your Care Plan

A step-by-step guide to navigating your condition, from finding the right doctors to advocating for the care you deserve.

Step 1: Doctors to See

Start with: Your pediatrician or primary care doctor, who can document tics and refer you on.

Then seek: A neurologist or pediatric neurologist experienced with tic disorders to confirm the diagnosis and discuss treatment.

Build your team:

Therapist trained in CBIT: for behavioral treatment of tics
Psychiatrist or psychologist: for ADHD, OCD, anxiety or depression
School counselor or learning specialist: for classroom accommodations
Sleep specialist: if sleep problems are significant

Step 2: Advocate for Yourself

Because Tourette syndrome is diagnosed far more often in boys, girls with tics may be told it is just a habit, nerves or attention-seeking. If tics have lasted a year or more, ask directly whether a tic disorder is being considered. Short videos of tics at home are useful, since many people can hold tics back briefly during an appointment. Ask about CBIT, and ask for screening for ADHD, OCD and anxiety, which often cause more day-to-day difficulty than the tics themselves. At school or work, you can ask about reasonable accommodations.

Step 3: Your Action Plan

Keep a tic diary noting the types of tics, when they started, and what seems to make them better or worse, such as stress or tiredness.
Record short videos of tics to share with your doctor.
Note any other challenges, such as focus, intrusive thoughts, anxiety or sleep problems.
Ask your doctor for a referral to a neurologist experienced with tic disorders.
Ask whether CBIT is available near you or through telehealth.
Discuss whether medication is worth considering, including its possible benefits and side effects.
Work with your school or workplace on accommodations and share reliable information with the people around you.

Important: This report is educational information, not medical advice. Always consult a qualified healthcare professional for diagnosis and treatment decisions.