Experts say there needs to be more awareness about the neuro-psychiatric disorder that causes patients to make involuntary movements or sounds.

Black and white picture of a boy sitting with his knees up and covering his face with his handImage for representation
Health Health Monday, January 11, 2021 - 16:05

Dr Asha Kishore was working in her office in Thiruvananthapuram one day when suddenly she heard a lot of screaming from outside. Someone appeared to be making a ruckus, shouting out obscenities. When she went to check, it was a young woman, jumping from a chair, touching herself inappropriately, uttering obscenities and laughing. The doctor realised the woman could not help herself – she had Tourette Syndrome (or Tourette’s Syndrome or TS).

In the 2018 movie Hichki, Rani Mukherjee’s character – a teacher with TS – explains the condition as a neurological disorder “when there are some loose connections in our brain and it gives small shocks”. She then makes a series of sounds, involuntarily. These are called tics – sounds or movements made by a person involuntarily. TS is a more complex condition when a person has multiple tics, vocal and motor. A neuro-psychiatric disease, it requires both neurological and psychiatric treatment.

“It’s not very common. More than TS, children can have tics. Tics are just sudden involuntary movements affecting the muscles. It can be motor tics – involuntary movements such as eye blinking, lip smacking, shoulder shrugging, finger snapping, foot tapping and so on. Or else it can be vocal tics – a sudden involuntary production of sound, like coughing or sniffing, yelling or barking, utterances of complex sentences or obscene words,” explains Dr Asha, a senior neurologist.

It becomes TS when there is a combination of complex tics. The cases where people involuntarily utter obscene words, like the woman outside Dr Asha’s office, come under a condition called coprolalia. When a person with TS involuntarily makes obscene gestures, it is called copropraxia.


Rani Mukherjee in Hichki

These tics – movements or sounds – are repetitive. In the movie Hichki, Naina Mathur (Rani Mukherjee) produces a series of sounds and moves her hands to her under-chin repeatedly. The movie is an adaptation of an autobiography by American teacher and motivation speaker Brad Cohen, titled Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had. The book was also adapted into a television film in English in 2008. Brad Cohen wrote about his experiences of growing up with Tourette’s, how he was often misunderstood, and how even teachers didn’t recognise his condition and punished him for it.

Limited awareness

“Awareness is limited. Tics are often considered as growing pains of teenagers going through transition, hormones working on them and so on. Unless it’s severe, it doesn’t affect studies, memories or any skill. Simple forms are easily missed,” Dr Asha says.

Tics, when they occur mildly and in isolation, are called simple. They become chronic or severe when they last longer. “Tics mostly occur from ages six to 17 or 18. Most of the time, the kids outgrow it in adulthood, or else it becomes unnoticeable. But there are cases when it can persist through life,” Dr Asha adds.

One such case is a young woman from Kannur. She is doing her graduation now, but the tics haven’t disappeared even at the end of her teens. Her mother Molly* says they noticed the tics for the first time when their daughter was 9.5 years old. “It’d be a sudden jerky movement or else clapping of hands. The first doctors we showed said that it would get better as she grows up. At NIMHANS in Bengaluru, they said it is tics disorder and not so severe. They suggested consulting the nearby hospital and following relaxation therapies. But later she began producing small sounds involuntarily. It is after this that she was diagnosed with Tourette Syndrome. We went for different types of treatment but there was no drastic improvement. She is attending therapy and trying to overcome it with psychological support,” Molly says.

Psychiatric issues

Psychiatric treatment becomes necessary as TS is both a neurological disorder as well as a psychiatric one, Dr Asha stresses. Along with the tics, patients might have psychiatric issues such as depression, Obsessive Compulsive Disorder (OCD), or Attention-Deficit/Hyperactivity Disorder (ADHD). Many times, children with TS are misunderstood as attention-seeking; they are scolded at home, ridiculed by classmates and punished by teachers.

“All the teasing and bullying by other children at school (because of the tics) and pressure can cause a lot of emotional distress in these kids. We give psychology therapy and medication. In Australia, they have developed a special technique – cognitive behavioural therapy – to treat TS,” says Dr Anil Kumar, professor in charge of child and adolescent psychiatry at the Thiruvananthapuram Medical College.

He remembers a young man who worked as a bus conductor in Ernakulam coming to him for treatment. The man had copropraxia and involuntarily made obscene gestures with his hands while he was on duty. This brought on a suspension.

Watch: Video on Front of the Class, film based on Brad Cohen's book

“There have even been suicide attempts because of the stigma. They fear there will not be a future, a proper job or marriage. A man from Alappuzha with TS got a job but he could not concentrate and had to resign,” Dr Anil says.

Doctors provide counselling to parents of children with Tourette’s and make them understand the condition. They write notes along with prescriptions which can be shown to teachers at school to excuse the child’s behaviour that can’t be helped, so they are not punished for it.

Often, children try to suppress their “urge to perform” these involuntary actions, to avoid being ridiculed at school. This builds inner tension and makes it worse for them, physically and mentally. “The action is generally preceded by an urge to perform, an ‘itch’. There is tension in their muscles and there is a vague sensation that it will be relieved if they perform the action. The urge is followed by the execution of the movement or the making of the sound that gives them relief,” Dr Asha says.

Causes

The causes of TS have not yet been identified. The brain MRIs of people with Tourette’s are normal.

“One theory is that it’s a genetic predisposition. But no single gene has been identified as causing tics. Another theory is that it’s a disturbance in neuro chemical transmitters like dopamine. Studies have indicated that the areas of the brain that are activated during tics are the same ones that are activated when we make a willed movement – say, when we want to cough. So the functional MRI shows up areas of the brain that get activated during a normal voluntary healthy movement. It can also be an inability to control the urge (to perform). It’s not clear if the abnormality is the urge or the inability to inhibit the urge, or both,” Dr Asha explains.

Since TS is seen more during adolescence (12 to 18 years), there is also a possibility that it could be the effect of hormones.

* Name changed

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