If you think your child has TS
Firstly don’t panic, TS is not an emergency. Take your time to look over the information on this website and observe your child with that knowledge. Many children experience tics in childhood which does not develop into Tourette Syndrome (around 20%). It is quite a normal development of the brain.
It is always recommended to get an experienced medical opinion. Contacts us and let us know what State or Territory you are from so we can assist where possible. You will need a referral from your GP for further assessment. Before you attend any practitioner, please make enquiries as to whether they have other patients with TS or have treated patients with TS. A common story is the doctor merry-go-round where unfortunate advice is obtained from people with little experience which means you have to see another and another, etc. This heightens anxiety in your child and you which does not help anyone.
There is no simple test for the detection of TS. Careful observation and questioning are the main procedures. Due to the ability of some with TS to repress symptoms for brief periods of time the physician may not see any tics. For this reason the evaluation process may take several visits or be aided by candid video recordings where the person is in a more relaxed environment than an office. A simple diarised list of symptoms is also helpful.
To be considered as having TS one has to have had 2 or more motor tics and at least 1 vocal tic for a period of 12 months or more. (Please note vocal tics can vary enormously. Some common examples are: throat clearing, sniffing, whistling, humming and grunting — often people are unaware these are in fact a vocal tic)
Generally Neurologists are the practitioners who handle diagnosis and medications as well as Psychiatrists, but you may be able to find a good clinical psychologist to help you with management strategies and understanding of any behavioural issues you may have. There is a referral database to see a psychologist at www.psychology.org.au. Once again please always check first for their experience with TS. (Tip: If searching on the internet look up OCD, Anxiety and ADHD as often TS will not show up)
The factors that appear to be of importance with regard to social adaptation include the seriousness of attentional problems, intelligence, the degree of family acceptance and support, and ego strength more than the severity of motor and vocal tics.
A major problem for parents and teachers is understanding which behaviours are beyond the control of the person with Tourettes and which can be — should be — controlled. If the family can learn to accept the member with Tourettes along with the symptoms — not despite them, it can provide the sense of security necessary for a healthy approach to the "outside world", promoting self-esteem and competency in school and peer group relationships.
If your child has just been diagnosed
You are most likely experiencing many feelings at the moment and to busy yourself gaining knowledge can be a great way to help yourself and your child through this time. Often a diagnosis of TS is met with a sense of relief, as many people have struggled with unexplained behaviours or symptoms and to finally know what you are dealing with, enables you to work towards finding the best possible management strategies and outcomes for your child.
There are a number of ways to support your child and family:
- join TSAA to be part of a community that understands and accepts TS
- order resources to educate yourself and those around you — knowledge is power!
- join the TSAA Facebook page to share experiences and learn from others in similar circumstances
- Attend TSAA events including support groups to access hard to come by experience, acceptance and understanding
2014 TSAA National Conference Presentation
TSAA President Robyn Latimer—Family Matters & Educational In-Service