Monday, May 23, 2011

What Tourette Syndrome is: The Facts

Tourette Syndrome (TS) is a neurological developmental disorder (as is autism and cerebral palsy)

Children and adults with Tourette Syndrome are not disturbed, mentally ill or mad and do not require psychiatric treatment

Tourette Syndrome is known as a 'spectrum' disorder (like autism) in which different individuals will have differing combinations and severities of symptoms that reflect the specific neurological 'impairment' to the affected areas of the brain

Tourette Syndrome has a strong genetic component (autosomal dominant) and so is inherited through one or both parents

People with TS are usually within the normal range of intelligence (IQ) with a considerable number falling into the upper end of the range

The most noticeable symptoms (and well known) are vocal and motor (movement) tics - tics are involuntary behaviours (although they can often be suppressed)

Some individuals are aware of an 'urge' to tic but may find it very difficult to prevent them from occurring

Motor tics may include blinking, nose-scrunching, pouting and other facial tics, eye-rolling and looking in unusual directions, head nodding, neck-twisting, shoulder-shrugging, limb movements, walking-strangely, muscle tightening relaxing (e.g. abdominal and limb muscles, flexing fingers, diaphragmatic movements, tongue movements) and many more. Diaphragmatic movements (tics) may affect breathing efficiency and throat, tongue and soft palate movements (pharyngeal/laryngeal/oesophageal) may affect eating, drinking and swallowing activity and can result in choking.

Vocal tics may include grunting, throat-clearing, squeaking/squeeling, tongue-clicking, blowing raspberries, exhaling rapidly or forcibly, blowing sounds, sniffing, blowing air through nose, calling out words or phrases, repeating other words/phrases or sounds (echolalia), repeating one's own words (palilalia) and making almost any other sound possible

Although highly publicised in the popular media, the symptom of copralalia in which curse words or obscene words are spoken is a rare condition in TS and affects only 10% or less of individuals. This figure is probably much lower in reality as improved diagnostic expertise has revealed TS to be more widespread with the vast majority of cases not involving copralalia. Some individuals also have copropraxia in which gestures are performed that are considered 'socially unacceptable' or rude.

Many people with TS tend to speak impulsively and will often say things spontaneously without being able to filter them out whereas other people might have such fleeting thoughts which go no further. This may include inappropriate words that may nevertheless be very true and relevant to the situation but are perhaps not generally socially acceptable.

Tourette Syndrome, in most cases, becomes apparent during early childhood and a child will usually experience symptoms before the age of 10 years and usually by 18 years. Although often becoming noticeable between the ages of 4 to 7 years it is usual for parents to be able to remember signs of it retrospectively at an earlier age.

There are some incidences of late onset in adulthood however these are sometimes seen as an increase in severity in people who have have had a milder form during earlier life.

Currently TS is diagnosed when both vocal and motor (movement) tics have been present most of the time for at least one year.

There are however many other symptoms and vocal and motor tics are really just the 'tip of the iceberg' but usually the part that gains the most attention.

The following are often a part of Tourette Syndrome:

- Obssessive and compulsive behaviours (OCB). These are neurological in origin (e.g. developmental) and a part of the TS spectrum. They usually differ substantially from the pattern seen in the psychiatric disorder, obssessive compulsive disorder (OCD) and tend to be realtively unresponsive to the drugs commonly used for treating OCD.

- Complex tics: may include: touching and tactile contact with objects and other people, twirling around, touching the ground, jumping and sequential or ritualistic behaviours. These are closely associated with compulsions and it may be impossible to distinguish them from each other. Many tics both simple and complex have a strong compulsive element.

- Impulsiveness

- Sensory hypersensitivity and difficulties with processing sensory input

- Attention deficit and poor concentration

- Sleep difficulties

- Hyperactivity

- Unwanted, 'swirling' and intrusive thoughts (these are rarely talked about but may be very unsettling and distracting to the individual and in some cases become a great difficulty)

- May talk rapidly or excessively. There may be a tendency to perseverate over a topic until it is exhausted due to a need to 'get to the bottom of things')

- Increased urine flow (polyuria) due to abnormalities in the production of neuro-hormones that control water reabsorption in the kidneys (deficit of anti-diuretic control)

- Stress may cause an increase in TS symptoms

- Emotional volatility (some people with TS find it difficult to control impulses and emotional responses  and may experience 'rage' epsiodes

- Stuttering and other speech difficulties

- Impaired ability to 'read' other people's intentions e.g. may not realise they are being deceived or mocked

- Strong need to socialise (although this is often offset by the difficulties that are sometimes experienced due to others reactions and attitudes towards 'Tourettic' behaviours and also to simple prejudice)

- Many of the symptoms and difficulties of Tourette Syndrome are a consequence of reduced filtering by the brain of impulses (motor, thoughts, emotion, vocalisation etc.) and sensory input. Many individuals experience 'low latent inhibition' in which they are aware of an overwhelming amount of detail in their environment which must be consciously and selectively filtered

It is not uncommon that in adulthood there may be an apparent lessening of motor tics. Many people are better able to manage or suppress tics with age although much of the 'hidden' part of TS will often remain. Some people are able to divert motor tic activity and make their tics less noticeable. Many tics may occur in muscles that are less noticeable such as the diapragm, the abdominal or gluteal muscles or involve tightening and relaxing. in some individuals the obssessive and compulsive symptoms may increase with age or there may be an increase in motor or vocal tics later in life. The pattern is highly unpredictable. Most adults report that overall their TS remains with them throughout their lives.

- In children there may be many issues that affect learning: these include slow reading and writing speed (although often very early and proficient readers and excellent at spelling and vocabulary), poor attention and concentration due to sensory processing difficulties and tics and distracting thoughts (thought tics). They may also experience difficulties socially due to other children's perceptions and reactions. One of the greatest difficulties a child with TS may have is having difficulty with following the many 'rules' and restrictions  imposed on them at school. Impulsiveness, involuntary tics and other behaviourisms do not fit well with the constraints of the classroom and the need for order and discipline. Teachers may have to develop an appropriate level of tolerance while still imposing 'normal' restrictions for other pupils. The key to this is usually 'talking about TS and education about the condition among pupils and staff.