- History of Tourette Syndrome.
- Characteristics of Tourette Syndrome.
- Causes of Tourette Syndrome.
- How Common is Tourette Syndrome?
- Diagnosis of Tourette Syndrome.
- Treatment Of Tourette Syndrome.
- Tourette Syndrome in Higher Education.
- Advice for Tutors in Higher Education.
Useful links for Tourette Syndrome links can be found here
History of Tourette Syndrome
Tourette Syndrome (TS) was first formally identified by a French Physician called Georges Albert Edouard Gilles de la Tourette (1857-1904) in 1884. He wrote an article describing nine individuals who displayed involuntary movements (tics), involuntary sounds, compulsive rituals and compulsive behaviours, all with childhood onset. The condition was subsequently named Gilles de la Tourette Syndrome or what is nowadays better known as just Tourette Syndrome (TS).
For many years after this TS was considered to be extremely rare. There is now growing evidence that it may be quite common and often goes un-diagnosed and there are probably many more incorrect diagnoses of TS.
These days TS is known amongst the medical professions as being a spectrum disorder of neurological origin with varying symptoms depending upon the person.
Characteristics of Tourette Syndrome
Tourette Syndrome is characterised by several indicators including muscular tics, vocal or phonic tics, disinhibited thoughts, emotional differences including difficulties in emotional regulation, obsessive compulsions and rituals. The characteristics and frequency of indicators can change throughout a “Touretter’s” life time. The onset of Tourette Syndrome is usually in childhood between the ages of 5 and 10 (average 7) years old (Packer, 1994). People with TS have little or no control over the indicators and often describe their TS as having a mind of its own or as a “monster within”. Tics, thoughts and compulsions have a habit of occurring when they are least wanted, and by purposely trying to repress them can make the urge become stronger and stronger until a release becomes inevitable.
Tics can be divided into two types:
Muscular tics - Rapid and repetitive movements of one muscle group, such as eye blinking, shoulder shrugging, squinting, or facial grimacing, hyperventilating, head nodding, stomach contracting.
Vocal tics - Repetitive sounds that can include throat clearing, sniffing, grunting, squeaking, coughing and words or phrases.
This division is based on the objective appearance of the tics, although some Tourettists would argue that there is no internal difference between muscular and vocal tics and the part of the brain that orders the tics does not differentiate (Bloss, 2006). Tics often last a short while, and then disappear and become replaced by a different tic. This is a phenomenon called “waxing and waning” by the medical professions.
As Tourette Syndrome develops so does the nature of the tics. They become more complex. Simple muscular tics of the head and neck often become complex muscular tics consisting of several muscle groups in one sequence.
Phonic tics often develop from meaningless utterances to full words and phrases.
Complex and developed tics can take on several forms (Packer, 94).
Echolalia is the vocal imitation of sounds made by people or objects. Many Tourettists find the urge to repeat these sounds irresistible, and often have to practice until the sounds are perfect. Pete, (Big Brother UK, 2006) has demonstrated a remarkable ability to imitate sounds such as bird songs, cat meows and drum beats.
One of the more disturbing indicators of Tourette Syndrome are vocal and muscular tics (coprolalia/copropraxia) in the form of expletives, socially taboo words and obscene and inappropriate gestures. The person with TS cannot control these urges and can often become scorned upon by other people. Coprolalia/copropraxia are only present in less than 30% of Touretters (Packer,94), however because of media stereotypes these are the symptoms the general public often and only associate with Tourette Syndrome.
Whilst the indicators discussed may seem negative, there are also positive characteristics of TS as there are in many types of neurodiversity. These can include:
Excellent musical abilities.
Memory capable of almost “total recall”.
Excellent peripheral perception.
Causes of Tourette Syndrome
Research has suggested that there is a genetic link to Tourette Syndrome, however no specific gene or group of genes have been identified (Health-cares.net). Studies have suggested that a Touretter has approximately a 50% chance of passing on some genetic information to a child which will cause TS or a milder tic disorder.
Gender has a significant impact on TS. Males who inherit the genes are 3-4 times more likely to develop TS than females (Bloss, 2006).
Studies have shown that anomalies with neurotransmitters dopamine and serotonin are frequently identified in Touretters and brain imaging techniques have shown some individuals with TS have anomalies in the frontal lobes, the basal ganglia and the cortex. However there have been no confirmed neurological causes for TS and these anomalies could easily be the result of another cause.
Factors such as poor physical health, emotional health and exposure to severe stressors have been shown to affect the onset and severity of tics. Out of these, stress has been identified as the most significant factor affecting the severity of tics (i.e. the more stress a Tourettist is under, the more likely the tics are to occur). However tics can also occur when the Tourettist is relaxed as they no longer feel the urge to repress them.
The exact cause or causes of Tourettes are still unknown.
How Common is Tourette Syndrome?
Tourette’s is generally said to be present in approximately 1 in every hundred school children. Tourette’s usually starts in childhood and continues throughout ones life.
Comings et al . (1990) screened approximately 3000 students in a school district in California. They found that 1 in every 95 boys and 1 in every 759 girls had definite Tourette Syndrome.
Diagnosis of Tourette Syndrome
Many people with Tourettes go un- or mis-diagnosed. According to the DSMIV (Packer, 1994), in order for Tourette Syndrome to be diagnosed, all the following criteria must be met.
1 Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.
2 The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.
3 The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.
4 The onset is before age 18 years.
5 The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington’s disease or post-viral encephalitis).
Treatment Of Tourette Syndrome
There are no known cures for Tourette Syndrome, however there are certain drugs which can alleviate some symptoms in some Tourettists. These drugs can have negative side effects and it really is a question of trial and error.
For treating tics, the medications often used are Clonidine (Catapres), neuroleptics, Haloperidol (Haldol), Pimozide (Orap) and Fluphenazine (Prolixin).
For treating obsessions and low mood the medications commonly used are Clomipramine (Anafranil), Fluoxetine (Prozac) and Sertraline (Zoloft)
For treating problems with attention and hyperactivity Clonidine (Catapres), Methylphenidate (Ritalin), Pemoline (Cylert), Dextroamphetamine (Dexedrine) and Tricyclic antidepressants can be used.
Tourette Syndrome in Higher Education.
Studies have shown that people with Tourette Syndrome are not likely to do as well in the education system and less likely to go into higher education.
Hagin & Kugler (1988) reported that 56% of Touretters were below expectations in mathematics, 52% had spelling deficits, and children with Tourette Syndrome were often likely to display problems with handwriting. A number of clinical reports show that children with TS follow the same normal curve for intelligence as the neuro-typical population (Packer, 94).
In western society the education system is generally tailored for neuro-typicals, often segregating those with learning difficulties in to special education classes. Studies have shown that 70% of children with TS were in special needs classes and this segregation is likely to enforce the idea that the student is inferior, and therefore conforming to the role of being inferior.
People with TS as with people with general learning difficulties are likely to suffer environmental, cultural and economical problems indicated by the social model of disability. These problems could be prejudice from lecturers and other students, unsuitable learning environments and procedures not tailored for the neurologically diverse.
Advice for Tutors in Higher Education
Collaborate with student:
In many cases the student will approach you and explain about their TS. It is a good idea to formulate a workable plan which takes into account the needs of the student and the course or module requirements.
People with TS as with many other learning differences are likely to have differences with attention in that they attend to everything, including posters, windows, noises from lights, clocks, heating etc. These people learn most effectively in environments with few visual and auditory distractions.
People with Tourette Syndrome often tic when they are in situations that can draw unwanted attention. This is quite likely to happen in lectures, workshops and seminars. Tourettists have to tic, and should not be asked to suppress them or to be quiet, as suppression can often result in stronger and more aggressive tics.
Release Time: Be prepared for a Tourettist to possibly want to leave the room if their tics get too intense. It is advisable not to ask them where they are going as an explanation may cause embarrassment in front of other students. Usually the absence will not be too long, however if things get too bad the student may not feel like they are able to return.
Bloss, M.V. (2006) Busy Body: My Life With Tourette’s Syndrome. Fusion Press: Satin publications Ltd. London.
Comings, D.E. Himes, J.A. Comings, B.G. (1990) An epidemiologic study of Tourette’s syndrome in a single school district. J Clin Psychiatry, 51; 463 - 469.
Hagin, R.A. Kugler, J. (1988) School problems associated with Tourette’s syndrome. In: Cohen, D.J. Bruun, R.D. Leckman, J.F. (1988) (eds), Tourette’s syndrome and tic disorders: clinical understanding and treatment. NY: John Wiley & Sons, 223 - 236.
Kurlan, R. (no date) Medications and Dosages. Tourette Syndrome Association. USA
http://www.tsa-usa.org/ (Accessed 04/08/2006)
Ottinger, B. (2003) Tictionary. Autism Asperger Publishing Co. Kansas.
Tourette Syndrome Plus
Packer, L.E. (1994) Educating Children With Tourette Syndrome: Understanding and Educating Children With a Neurobiological Disorder. Tourette Syndrome Association, Inc. Long Island Chapter.
Tourette Syndrome Association