A huge thank you to Sophia Savidis-Macris who joined us for what was both an educational and inspirational talk on autism and Tourette Syndrome.
Sophia shared with us the events that led up to her ASD diagnosis when she was 16. How years of masking took their toll and everything came to a head on a year 10 work experience day. With the support of her family and her then deputy head who recognised some of the traits and challenges Sophia described her journey towards diagnosis began.
Looking back Sophia acknowledges how important that diagnosis has been to the rest of her life so far – she believes for example that it has helped to enable her to get the help and support she needed to continue into 6th form and onto university where she successfully studied to become a Psychology PHD student.
One night Sophia went to bed as usual and woke up in the morning unable to stop jerking and barking. And so started another journey into the world of Tourette Syndrome (TS). Sophia explained that like autism, TS is a spectrum condition. Individuals can move across the spectrum over time or in response to environmental factors. 300,000 people are known to be diagnosed with TS in the UK and it is far from a rare condition. Also like autism, it is thought that TS is inherited although this is a complex area as not one single gene has been identified to be the cause.
Types of tic:
Sophia talked about the different kinds of tics that someone with TS might display – motor (movement tics) or vocal (sound tics).
She then went on to describe ‘The Urge’ – some of the feelings different people may experience before they tic.
Tics tend to be more triggered by any intense emotion both positive and negative. Children can find their tics increase for example in the run up to an exciting event like birthdays or Christmas but they can also increase due to anxiety or tiredness.
And she then explained that all tics are involuntary. Some people can hold their tics back for a while or suppress them but this can vary from person to person and also situation to situation.
One of the many interesting areas for discussion was around the differences between tics, stims, compulsions and habits. They can be hard to differentiate – especially as a tic for one person could be a stim for another, a compulsion for another and a habit for another. Sophia’s personal conclusion was that it only matters if you are trying to change or manage the behaviour.
There was also a lot of discussion around common misconceptions of Tourette Syndrome, the most common of which is that it is exclusively a swearing disorder. This is a complex vocal tic called Coprolalia and actually only affects approximately 5-10% of all individuals with Tourette’s. But other misconceptions are for example that you grow out of Tourette’s (you don’t, although some people do learn to manage, suppress or disguise their tics) and that Tourette’s is a psychological condition (it isn’t, it is a neurological/biological one).
Sophia finished with some inspiring stories of people with autism and TS, although to be honest her story, and her generosity sharing both it and her insight and knowledge was inspirational in itself.
A huge thank you again to Sophia.
To sign up for Sophia’s next talk and keep an eye open for other talks by inspirational autistic individuals as tickets become available please join our Facebook community and follow us on Eventbrite.