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TS Tourette Syndrome Association of Australia

Meet Rose

My name is Rosaria Strazzeri, better known as Rose. My pronouns are They/Them/Her/she.

I am 53 and I am a Tourettic, Autistic, ADHDer with OCD, executive function difference, social and general anxiety, Ehlers Dahnlos/Hypermobility, POTS... all the usual extras that come with the Tourette Package.

I have had tics since I was about 2. It started with blinking and shrugging then abdominal tics, jaw and facial tics. My vocal tics started at around 5 and were sniffs, palate clicking, pitch changes, accents and many blurtations. I didn't have copro. As I aged I developed complex vocal tics where I say inappropriate or mean things about people that can be contextually accurate which makes them seem deliberate. My tics were mild until my teens. Then they increased but by then I was pretty much suppressing them all because I got picked on in my first week of high school. One of the mean girls started calling me blinky bill and mocking my tics. I suppressed mostly at school but also at home because there was a lot of shame around my 'habits'. I dont blame my parents because the doctors at that time told them it was silly behaviour.

My tics settled down when I was about 16. My OCD and anxiety ramped up though and to be honest that was worse. I had practically no tics from 16 - 19 then they came back with extra complexity (more muscles involved and more injuries). I was at Uni at that time so I went back to suppressing them. In retrospect I wish I hadn't because I had built a great support network, but it still felt like my dirty little secret. This was in the late 80's early 90's.

My behaviour and emotion masking started from about 5th grade. I feel like this actually turned people off me and made me seem weirder because I was not being myself so I had no self esteem and was very insecure. I hid my tics when I was taken to paeds and various quacks so they said I was just a very excitable or anxious child. Mum got told she was a histrionic parent and it was her fault.

I got my ADHD diagnosis at 16/17 from the psych I was seeing for depression. His advice was: "Suck it up, no one will believe it because you're a girl, you'll just have to work harder" I struggled through school due to my ADHD, the energy I used for tic suppression, bullying for being a 'dag' and learning difficulty. I didn't get much support but there were some teachers who saw my potential and they made a difference. High school was awful until year 10. At that point I put my foot down. I started to fight back and more or less be myself. It may have helped that I wasn't ticcing but the OCD and ADHD were constant and I wasn't hiding those. I went from being an outcast to reasonably popular. I talked to the school vice principal about how upsetting it was to keep getting reports stating: "doesn't meet potential", "Is disorganised/Needs to organise her work better", "wastes time" "Is too slow", "Needs support in class to finish work" etc.

I pointed out how hard it was to learn in classes where I was sent out minutes after entering. Given my learning issues why was I expected to teach myself while the teachers dedicated themselves fully to the students who did not need extra support? She agreed and the teachers who I had issues with were told to do their job or admit I was too much. She then ensured all of my teachers from year 11 -12 were on my side.

I lifted my grades and got into uni to complete an Arts Degree. I struggled with learning at uni until one lecturer identified my issues and helped advocate for me.

I was finally diagnosed with TS at age 21 just after I finished uni by Neuropsychiatrist Professor Sachdev. His advice to me was that I should not consider meds because I was managing my life without them. I wish I'd listened but I wanted to be tic free. My psychiatrist told me my tics would likely disappear as I was in my 20s. But he prescribed Haloperidol so I could lead a 'normal' life until then. I had every possible side effect and my tics actually got worse. I also stopped taking it while I was on a high dose rather than weening off and that did some permanent damage I still live with 30ish years later.

I've trialled other meds on and off but only nicotine and CBD have given me some relief. I smoked from ages 12 - 36 as it reduced my tics. It also reduced my lung capacity and caused gut issues. I never got hooked so it was easy to quit. I got quite depressed and suicidal when I hit my mid 20's and realised my tics were not going to disappear as promised. I've since then met many other adults with TS whose tics also didn't go away, infact that only seems to happen for a minute number of people. Most of us continued to tic at varying severity.

Anyway, life levelled out eventually. I actively stopped masking and suppressing and found a great counsellor in my late 20's who was right into Exposure Response Protocol Therapy. Together we worked on my OCD and happily I can still use those strategies to manage it well.  The ADHD and tics persist but I've learned to roll with them and get accommodations when needed.

I completed a 2nd degree in my 40s, a Bachelor of Speech Patholgy. The uni and faculty were very supportive and I graduated with 1st class honours and 2 University medals.

I've been a paediatric speech pathologist for 11 years. Prior to that I was an openly Tourettic Director of OOSH (school aged child care), a teacher's aide, a disabilty support worker, a respite care provider, and a housecleaner. I also had stints doing voice work and various odd jobs in earlier years. I have been working since I was 14 despite the barriers of my TS and other conditions. Like others I've had lots of public harassment, attempts to kick me out of places, police and security called, I've been spat at, attacked physically and excluded by past friends and family (past for a reason). I have an excellent support network of family and friends who up me get through the hard stuff.

People who know me often wonder why I didn't choose a more creative career path because I am quite skilled in textiles and design and have a good eye for fashion. I think I've always chosen to work in people supporting jobs because my lived experience has qualified me for it.

I've lived independently for a long time. I've been a Tourette and diversity advocate/mentor/activist for 30 odd years and an active volunteer with the TSAA on and off in that period, stepping up my involvement in the last 7 years. I'm mostly known for being one of the admins for our main Facebook group. I love being part of the Aussie TS community; it's helped me a lot with my own self acceptance and I have made precious friends in our 'tribe'.

I'm also connected to global TS forums and activists.

Have a story of your own to share?  We'd love to hear it.  Let us know through our Contact Us page.

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