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Frequently asked questions

We often get asked specific questions about Tourette Syndrome. We have tried to answer them all for you in our frequently asked questions section.

If you have any other questions about TS please contact our Helpdesk.

About Tourette Syndrome

Do people with TS enjoy ticcing?

Tics are involuntary and very few people will describe the sensation of ticcing as enjoyable. However, performing a tic can give a feeling of relief.

How likely is it that a child with motor tics will develop TS?

Tics are common in children, especially in boys, but mostly they do not develop into TS. However, in TS vocal tics usually start later than motor tics, so it is not certain that a child with tics will not develop vocal symptoms.

Why does my child only seem to tic at home?

Many people with TS are able to suppress their tics for a limited time. Some children suppress their tics when at school or in a doctor's surgery.

This can be tiring. When a child comes home from school, they may be too tired to suppress or they simply feel comfortable enough to express their tics.

If your child supresses in front of a doctor it can be helpful to video the child's tics at home. This could help with diagnosis and explaining to school what your child is holding in.

What is the connection between TS and streptococcal infections?

This area is still considered controversial. Streptococcal infections might trigger TS in some patients, and infections might be associated with worsening of symptoms. But any infection could do that, not just streptococcal. We don't yet understand this area fully, so there are as yet no implications for treatment.

Is it possible that Temporal Lobe Epilepsy is linked to TS?

There is no connection between the two, but sometimes misdiagnosis of the symptoms can occur.

How can I access habit reversal training?

To access HRT you need to be referred by your GP or consultant. Unfortunately, there is not currently a huge number of psychological therapists working with TS, but we do have a short list of people who do. Please contact us to access this free information. 

Am I considered disabled because I have TS?

Whether or not TS is classed as a disability depends on the severity of TS and its impact on your ability to carry out daily activities. For a condition to be classed as a disability, it must meet the legal definition in the Equality Act (2010).

You're disabled under the Equality Act 2010 if you have a physical or mental impairment that has a regular, 'substantial' and 'long-term' negative effect on your ability to do normal daily activities.

What 'substantial' and 'long-term' mean

  • 'substantial' is more than minor or trivial - eg. it regularly takes much longer than it usually would to complete a daily task like getting dressed
  • 'long-term' means 12 months or more - eg a breathing condition that develops as a result of a lung infection

The Equality Act 2010 doesn’t apply to Northern Ireland.


Getting a diagnosis of TS

How can I find a consultant who can diagnose or treat TS?

Tourettes Action has details of consultants specialising in TS in England, Wales and Northern Ireland. Please contact us to request this free information.

How can I get diagnosed with TS?

For detailed steps on how to get a diagnosis and what happens afterwards visit our 'Getting diagnosed' page.

What are the benefits of getting a diagnosis of TS?

There are various benefits of getting a diagnosis of TS:

  • A diagnosis can give empowerment to the individual, providing a framework to better understand the reasons behind TS related actions and behaviours.
  • A diagnosis leads to support networks and can help you find the right path to effective treatment.
  • It allows you to communicate effectively about your condition.
  • It is a reference point to understanding your rights and entitlements.
  • A diagnosis can help avoid discrimination and misunderstanding.

Should I get a diagnosis for my child? I don't want to be stuck with a label.

Some parents worry that a diagnosis will pigeon hole their child. Of course TS contributes to who a person is, but as with any health condition, you are not defined by your diagnosis. This is why it is vital that children with TS receive support and encouragement at school and home, to help develop their full range of capabilities as a person.

Most people choose when to disclose their TS, for example it might be appropriate to let an employer know but not necessary to inform a landlord. A diagnosis is useful in making sure that you receive equality and support across all areas in life.

My child has developed tics, should I get a diagnosis?

This is not always a simple choice for parents to make. Sometimes the symtoms will be severe and have a significant impact on the daily life of a child, meaning getting a diagnosis is an obvious course of action to achieve relevant treatment and support.

However, when symptoms are milder parents may be concerned about intervening too soon in case symptoms subside, and therefore want to avoid putting their child through unnecessary stress. In these cases, try to keep a diary of your child's tics and how they progress. For a diagnosis to be made your child should have both motor and vocal tics for at least a year. Talk to your GP about your concerns and follow their advice.

I believe my child has TS but my GP keeps telling me his tics are just a habit and that he/she will grow out of them. What shall I do?

This can be a common response from GPs and sometimes it is appropriate to challenge their assertion. This does not have to be confrontational; approaching the GP with evidence and literature that strongly points to similarities between your child's symptoms and TS should be enough to be referred onto more specialist help. See 'How do I get a diagnosis'?

If your GP refuses to refer you to a consultant, you can ask the GP to explain their reasons. If you are not satisfied still, then you can ask your GP for a second opinion. Although you do not have a legal right to a second opinion, a GP/healthcare professional will rarely refuse to refer onto one.
More information on getting a second opinion can be found on the NHS Choices website.

I've been to see a GP about my/my child's symptoms, and was told that it can't be TS because I don't swear.

It is a common misconception that everybody with TS swears, but actually only 10 per cent of people have coprolalia (involuntary swearing). If your GP thinks that coprolalia needs to be present for a diagnosis you can show them information from Tourettes Action or tell them to call us on 0300 777 8427.

I am an adult who has developed TS symptoms. Is it possible that I could have a late onset diagnosis?

Although it is more common for TS to manifest in childhood, it can sometimes manifest in adulthood too. Symptoms may be triggered for a number of different reasons, but essentially those with TS have a genetic disposition to the condition.

What is the youngest age TS can be diagnosed?

Generally tics start at about five years of age, sometimes younger. Many parents say that they noticed something different about their child as a baby, but a diagnosis can only be made when children are older. On average, most children in the UK are diagnosed around the age of seven.

Do consultants accept referrals and patients from outside of their area?

Usually consultants are happy to receive out of area referrals. However, there may be problems with funding making it difficult for a GP to refer to an out of area consultation. You should discuss this with your GP. Some consultants will also take private patients.


Treating Tourette Syndrome

How do I register as a volunteer for clinical trials of new drugs?

Unfortunately, there is currently no registry for such trials in the UK, but keep an eye on our website for future trials.

What is the difference between a psychiatrist and a clinical psychologist?

A psychiatrist is a doctor who can prescribe drugs. A psychologist is not necessarily medically qualified but is trained in psychological assessment and treatment. The involvement of a psychiatrist can be helpful to assess the problems associated with TS and to decide on the most appropriate treatment.

What if no treatments seem to help?

If no treatment seems to help, talk to your consultant about your diagnosis, perhaps it needs to be re-assessed. Consider whether all the treatments been used to maximum therapeutic effect - proper doses for a reasonable time unless adverse effects prevented this. Have any treatments not been tried? Could a non-medical treatment such as habit reversal be beneficial?

Finally, if all these have been tried, look at ways to reduce the impact of tics on daily life.

Should my child take medication for TS?

The decision to start medication in children is a difficult one. One of the reasons for considering medication is that the tics or behaviours are causing significant distress or disability in your child or preventing their development in some way.

Medicines can also have adverse effects at different doses. It can be a balancing act between the pros and cons of treatment versus no treatment at all.

The key to success in this area is to maintain a good dialogue with your child about which tics/behaviours are particularly distressing, to be clear in your own mind about what you hope medication might achieve and to have a good dialogue with your treating doctor about any good or bad effects of treatment.

I/my child recently got diagnosed and was discharged without any course of treatment/therapy. What shall I do?

Sometimes treatment may not be appropriate, but it is important that you know the reasons for this. You can ask the consultant to explain why there is no care plan.

Although at the point of diagnosis it may not be necessary to introduce medication or therapy, this may change over time if symptoms become worse. It is important to keep in communication about changes to you or your child’s condition in case a new course of action is needed.

As a charity we provide information on managing symptoms, including practical advice, fact sheets and details of what treatment and therapy is available. Visit our support section for details.

Often it can be very helpful and comforting for families to share information and support. Our support groups and forum are a great way to connect with the TS community.


Managing Tourette Syndrome

What can be done about rage and violent compulsions in people with TS?

The causes of anger/rage/frustration in TS are many and various. The circumstances when this happens and what actually happens need to be looked at. Sometimes people exhibit violent behaviour as part of a tic, or as a frustration about compulsions or thoughts. Sometimes it can be a manifestation of frustration, if a tic prevents a person doing something they want.

There are a variety of treatments for anger outbursts in relation to TS. Some of these involve psychological treatments and can involve the participation of the whole family. If the outbursts are more directly related to tics or OCD, then direct treatment of these things is probably the best way forward. If it is a compulsion, then SSRI medications or cognitive behavioural therapy may help.

Read our anger management document for more information on this issue.

What can be done about spitting tics?

Spitting in the context of TS is a complex tic. The first thing to do is to make sure that spitting is a tic rather than a 'willed action'. If it is a tic then the treatment is no different to any other tic.

Medications may damp down the behaviour. Psychological interventions such as habit reversal may be helpful.

If it is a tic, try and minimise the environmental effect of spitting to reduce the chance of social exclusion. For a child at school, this may involve working with teachers in school and being inventive about ways of preventing others from being spat on. For an adult, this might involve carrying something that you can spit into.

Should I tell my child off when they tic?

Tics are involuntary movements and it is counter-productive to tell a child off when they tic and tell them to stop as they cannot help themselves. If they feel unable to tic in front of friends and family they may suppress their tics, which is tiring, and they will still tic in private.

For many children these body movements and noises can be confusing and it is productive to encourage them to talk about them with you and let their tics out when they need to.

Should I talk to my child about their tics or ignore them?

For many children these body movements and noises can be confusing and it is productive to encourage them to talk about them with you and let their tics out when they need to. There are books available that you can read with your child, which help explain the condition in easy to use language.

Many children say that once they know what is happening to their body it is easier to handle, and they are happy to be able to explain to other people.

Do I need to disclose my condition to an employer?

It is not a legal requirement to tell your employer of your condition. This decision is to be made at your own discretion, and will depend on the severity of your TS and how it impacts your life, and more poignantly, your ability to work in a specific role. You can let your employer know about your condition at the following stages. Read more about TS in work.

My child has developed tics and I'm thinking of pursuing a diagnosis. Should I wait to talk to the school?

Even without a diagnosis, it is important to communicate with the school about any behaviour or tics that you notice.

Find out if the school have noticed anything as well. Even if they haven’t it is still important that they are made aware of the child’s behaviour at home as this could be impacting on their education development still, for example it may be very difficult for them to complete homework, because of the tics or exhaustion from having suppressed tics at school all day.

You can provide the school with TA teacher leaflets which provide information about TS, possible barriers to learning and classroom strategies.

Find out if the school have any experience of pupils with TS. What strategies/support mechanisms have they in place for pupils with TS?

It is important for parents and schools to be as informed and prepared as possible in how the school will support the pupil, should symptoms develop and the child get a diagnosis.

My child has recently been diagnosed with TS. The school don't seem to have any experience or knowledge about the condition.

You will find more information on our support in school page.

Is my child automatically entitled to a SEN statement because they have TS?

No. The local authority will usually make a statement if they decide that all the special help your child needs cannot be provided from within the school's resources. These resources could include money, staff time and special equipment.


 
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