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Understanding Tourette Syndrome

Chances are when people think of Tourette Syndrome (TS), a number of stereotypes come to mind.  It is our hope that this information will clarify what Tourette Syndrome is, and what it is not.  In doing so, prospective adoptive families may feel more confident in meeting the needs of a child with TS.

In mainstream society, one might describe themselves as having “Tourettes” when they misspeak, or to make light of excessive swearing.  However, TS is a complex diagnosis that is often misrepresented in the media. This leads to misunderstanding the common symptoms of TS. 

While TS can bring challenges to a child and family, there are many opportunities to decrease the challenges by being a strong advocate and a supportive parent.  It is not the existence of TS that is the problem; it is more often the reaction of the community that causes difficulty in the lives of a child and family with TS.

What is Tourette Syndrome?

Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics.  Tics are experienced as being similar to having the urge to sneeze or scratch an itch, and must eventually be expressed.

About 90% of people with TS have another disorder, like Attention Deficit Hyperactivity Disorder (ADHD) or Obsessive Compulsive Disorder (OCD) or anxiety.  People with TS are more likely to have depression.  This may be related to the experience of being bullied by other children because of tics, not being understood at school, or perhaps there is a link between the brain differences for people with depression and TS.  People with TS and co-existing conditions are informally considered to have “TS Plus.”

It is thought that the prevalence of Tourette Syndrome is about 1% of the general population.

  • TS is not a mental illness, it is a neurological disorder.
  • The symptoms of TS are not learned behaviours.
  • TS is not a result of bad parenting.
  • TS is not curable, or voluntary.

Symptoms of Tourette Syndrome:

There are two categories of TS tics:

Simple:

  • Motor - Eye blinking, head jerking, shoulder shrugging and facial grimacing;
  • Vocal - Throat clearing, yelping and other noises, sniffing and tongue clicking.

Complex:

  • Motor - Jumping, touching other people or things, smelling, twirling about and, although very rare, self-injurious actions including hitting or biting oneself;
  • Vocal - Uttering ordinary words or phrases out of context, echolalia (repeating a sound, word or phrase just heard) and in rare cases, coprolalia (vocalizing socially unacceptable words).

The range of tics or tic-like symptoms seen in people with TS is broad. The complexity of some symptoms often confuses family members, friends, teachers and employers who may find it hard to believe that the “tics” are unintentional.

The most common first symptom observed is a facial tic, such as rapidly blinking eyes or twitches of the mouth. However, involuntary sounds, such as throat clearing and sniffing, or tics of the arms and legs may also be the initial signs. 

Sometimes these signs are initially thought to be typical behaviours of childhood, or due to allergies or vision problems.

For a person to be diagnosed with TS, he or she must:

  • Have both multiple motor tics (for example, blinking or shrugging the shoulders) and vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
  • Have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
  • Have tics that begin before he or she is 18 years of age.
  • Have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).

(Source: http://www.cdc.gov/ncbddd/tourette/diagnosis.html#TS)

The first symptoms are usually noticed when a child is between the ages of 3 – 9 years old.  TS is found in people across all ethnic groups, and is more common in boys than girls.

Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with tics lessening in the late teen years and beyond.

Rage Episodes (Neurological Storms)

Children with TS may be more likely to experience “Rage Episodes” or “Neurological Storms.”  These are episodes of ‘raging” that are different than a temper tantrum because they do not appear to have a purpose or a goal.

Neurological storms are more common in children who have TS Plus and they are thought to be a result of “sensory overload” for the child.  Most professionals who work with children who have neurological storms understand that the episodes are not voluntary.  Often the child has trouble remembering the episode and is remorseful afterward.

Some possible pathways to “rage attacks” include:

  • Medication side effects
  • Language processing deficits
  • Executive dysfunction (such as difficulties making transitions or difficulty multi-tasking)
  • Nonverbal learning disability (such as not reading facial expressions or other cues)
  • Difficult temperament
  • Social impairments
  • Anxiety
  • Sensory integration dysfunction
  • Obsessions and/or compulsions
  • Mismatch between environmental demands and preferred style of learning or working
  • Frustration due to learning disabilities that have not been addressed
  • Mismatch between characteristics of the individual and characteristics of “significant others” in the individual’s life.
  • Teacher provocation

Managing Tourette Syndrome

For the most part, the health of children with TS is not adversely affected by the experience of tics.  Severe tics can cause orthopedic complications and pain because of the repetitive motions, and so medication may assist in some cases.

Some families find that medication helps with managing neurological storms, although not every medication works for every child.  The thought is that medication can help the child regulate for a short window of time.  This allows the child to learn and remember de-escalation techniques such as deep breathing, counting to ten and other calming strategies so that the storm can be avoided or reduced.  The medications traditionally used can cause significant side effects so a working relationship with the doctor is important to determine dosage and type of medication that works best for each individual child.

Talk therapy like Cognitive Behaviour Therapy (CBT) can also help children learn to cope with their TS and TS Plus symptoms. 

Parenting a Child with Tourette Syndrome

“Punishing a child for neurologically based dysregulation is unlikely to cure the child’s neurology or teach the child not to become deregulated” - (Packer & Pruitt, 2010)

“Kids do well if they can.” (Ross Green Ph.D.)

In our society, there is an emphasis on correcting inappropriate behaviour in children.  We often ascribe consequences for children when they appear to be misbehaving or acting out.  Because the nature of TS is neurological, it is important for parents to know that the child is not acting out purposefully; the child is reacting to stimuli that their brains are unable to process in the moment.  For this reason, punitive responses from adults will not be helpful to change behaviour, and in fact, may cause the child additional stress.

It is more helpful to accommodate the environment for the child to reduce the likelihood of “sensory overload.” Parents who are calm, intuitive and able to “think outside of the box” are best able to meet the needs of a child who has TS.

This being said, children with TS are also typical children in many ways, and so parents of a child with TS have to walk a fine line between understanding and over accommodation. Parents are periodically faced with deciding whether or not certain actions are the expression of TS, or a child testing the limits as many kids do. Parents then must determine the appropriate response. A child should be encouraged to manage socially unacceptable behaviour whenever possible, while also being understood that this can be difficult for a child with TS. 

It’s important to find support for a child soon after the diagnosis of TS is made.  Some of the symptoms of TS may provoke bullying and rejection by peers.  The child’s school will need to be educated on the accommodations needed for the child to have the best chance at academic and social success.   

Because tics and associated considerations may cause an increase in attention by people in the community, it is important for parents of a child with TS to be strong in advocating for their child, while also having a plan for addressing the questions of curious passersby.

Living life with your child who has special needs (including TS) can be incredibly rewarding.  Going through hard times and coming out stronger and closer is a great feeling for a parent and their child. 

Helpful Links and Resources for Tourette Syndrome:

Tourette Syndrome Foundation of Canada - http://www.tourette.ca/index.php

Tourette Syndrome Foundation Local Chapters (including Ontario) - http://www.tourette.ca/local-support

Tourette Syndrome Foundation of Canada – Kids Korner - http://www.tourette.ca/resources-kids.php

Children’s Mental Health Ontario - http://www.kidsmentalhealth.ca/parents/tourette_syndrome.php

Tourette Syndrome Neurodevelopmental Clinic – Toronto Western Hospital - http://www.uhn.ca/MCC/PatientsFamilies/Clinics_Tests/Tourette_Syndrome_Clinic

Content References:

American Psychiatric Association – DSM-5 Development- http://www.dsm5.org/Pages/Default.aspx

Tourette Syndrome Foundation of Canada: - http://www.tourette.ca/resources-newsletters-tgl.php?entry_id=6869

Leslie E. Packer Ph.D. - http://www.tourettesyndrome.net/disorders/tourette%E2%80%99s-syndrome/overview-of-tourettes-syndrome/

Ross W. Greene Ph.D. (Author of the Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children) -http://www.livesinthebalance.org/

Children’s Mental Health Ontario - http://www.kidsmentalhealth.ca/parents/tourette_syndrome.php