How Does Tourette Syndrome Affect Children and Families?

What you need to know

• Tourette syndrome (TS) involves involuntary motor and vocal tics that persist for at least a year
• Only about 10% of people with TS have coprolalia (involuntary swearing)
• TS often occurs with other conditions like ADHD, OCD, and autism
• The condition can significantly impact a child’s physical, mental, and social wellbeing
• Supportive, compassionate care is crucial to help children and families cope with TS

Understanding Tourette Syndrome

Tourette syndrome (TS) is a neurological disorder that affects about 1% of school-age children. It causes people to make involuntary movements and sounds called tics. To be diagnosed with TS, a person must have both motor and vocal tics that have lasted for at least a year.

There’s a common misconception that TS always involves uncontrollable swearing or saying inappropriate things. In reality, this symptom (called coprolalia) only affects about 10% of people with TS. The vast majority of people with TS do not have coprolalia.

Tics can take many forms:

• Simple motor tics: Brief movements like eye blinking, shoulder shrugging, or head jerking
• Complex motor tics: Coordinated movements like jumping, twirling, or touching objects
• Simple vocal tics: Sounds like throat clearing, sniffing, or grunting
• Complex vocal tics: Words, phrases, or changes in speech patterns

Most people with TS feel an urge or sensation right before a tic occurs. This is called a premonitory urge. The urge builds up and is only relieved when the person performs the tic. Trying to suppress tics often makes the urge even stronger.

Tics tend to first appear around ages 5-7. They often get worse during the preteen years (ages 10-12) and may improve in the late teens and early adulthood. However, the course can vary greatly between individuals.

Beyond Tics: The Full Impact of Tourette Syndrome

While tics are the hallmark symptom of TS, they’re often just the tip of the iceberg. The full impact of TS goes far beyond just the physical tics:

Co-occurring Conditions

About 80-90% of people with TS have at least one other mental health or neurodevelopmental condition. Common co-occurring conditions include:

• Attention deficit hyperactivity disorder (ADHD)
• Obsessive-compulsive disorder (OCD)
• Autism spectrum disorder
• Anxiety
• Depression

These additional conditions often cause more daily challenges than the tics themselves.

Hidden Symptoms

Many people with TS also experience less visible symptoms that can be very distressing:

• Intrusive thoughts: Disturbing or violent thoughts that pop into the mind
• Mental tics: Repeating words or phrases in one’s mind
• Urges to say or do inappropriate things
• Compulsions to touch objects or perform actions in a certain way

These internal experiences can be exhausting and upsetting, even if they’re not visible to others.

Physical Impacts

Frequent tics can lead to:

• Pain and discomfort
• Muscle tension
• Fatigue
• Difficulty with fine motor tasks like handwriting

Emotional and Social Challenges

Living with TS can take a major emotional toll. Many children and teens with TS experience:

• Low self-esteem
• Social anxiety
• Isolation and loneliness
• Depression
• Difficulty fitting in with peers

Bullying and teasing are unfortunately common. Many people misunderstand TS and may react negatively to tics.

Academic Difficulties

TS can interfere with learning and school performance in several ways:

• Tics may be distracting in the classroom
• Focusing on suppressing tics takes mental energy away from learning
• Co-occurring conditions like ADHD can impact attention and organization
• Anxiety about tics may lead to school avoidance

Family Stress

TS affects the whole family, not just the individual with the diagnosis. Parents and siblings may experience:

• Worry and sadness about their loved one’s struggles
• Frustration with disruptive tics and behaviors
• Embarrassment in public situations
• Guilt about not knowing how to help

The unpredictable, waxing and waning nature of TS symptoms can be very challenging for families to navigate.

Supporting Children and Families with Tourette Syndrome

While TS can present many challenges, there are ways to help children and families cope:

Medical Management

Most children with TS don’t need medication to manage their tics. However, medications may be helpful for some individuals with severe tics or co-occurring conditions. It often takes trial and error to find an effective medication with tolerable side effects.

Behavioral Therapies

Several behavioral therapy approaches can help reduce tic severity and frequency:

• Habit reversal training: Learning to recognize tic urges and perform a competing response
• Comprehensive Behavioral Intervention for Tics (CBIT): Combines habit reversal with relaxation techniques and other behavioral strategies

Psychosocial Support

Therapy and counseling can help address the emotional and social impacts of TS. This may include:

• Cognitive behavioral therapy for anxiety or depression
• Social skills training
• Family therapy
• Support groups

Educational Accommodations

Schools can provide support through:

• Educating teachers and staff about TS
• Allowing breaks to release tics
• Providing a separate testing environment if needed
• Accommodations for difficulties with handwriting or attention

Building Understanding

Educating others about TS is crucial for reducing stigma and creating a supportive environment. This includes:

• Teaching the child how to explain TS to peers and adults
• Educating family members, teachers, and healthcare providers
• Raising awareness in the broader community

The Role of Compassionate Care

Healthcare providers play a vital role in supporting children with TS and their families. Key aspects of compassionate care include:

• Listening to the child’s lived experiences without judgment
• Acknowledging the full impact of TS beyond just the visible tics
• Providing education about the condition
• Offering resources and referrals as needed
• Advocating for the child’s needs at school and in other settings
• Helping the child build self-acceptance and resilience

With understanding, support, and proper management, many children with TS go on to lead fulfilling lives and reach their full potential. While TS presents challenges, it does not define a person or limit their abilities.

Conclusions

• Tourette syndrome is a complex neurological disorder that goes far beyond just tics
• The condition can significantly impact a child’s physical, mental, and social wellbeing
• Co-occurring conditions and “invisible” symptoms often cause more daily challenges than tics
• With proper support and understanding, children with TS can thrive
• Compassionate, family-centered care is crucial to help children and families cope with TS