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Posted 11 Jun 2021

Tourette Syndrome Is (Almost) As Prevalent As Autism: Where Is The Support?

As Tourette Syndrome Awareness Month draws to a close, I wanted to take the chance to amplify the voices of the TS community in the hope of increasing understanding and acceptance, so I’m going to start with the basics and move on to some practical advice for those in need of support.

Tourette Syndrome is characterised by tics both motor and verbal, but there is much more to it than this. TS is a neurodivergent identity in its own right, but also commonly co-occurs with ADHD and OCD. TS is estimated at approximately 1% of the population, which is almost as prevalent as Autism (1.6%) yet Autism research outnumbers TS research by a factor of fifty to one. Yes, you read that right, 50:1. No, that number is not made up, I researched it myself.

For a small percentage of people their tics may take the form of Coprolalia or Copropraxia which means that a person’s tics may be verbally or physically obscene. Most Tourette’s tic are less noticeable to others, but remain distracting, painful to suppress, and draining for individuals.

Tics can develop at any point throughout someone’s life and can turn their world upside down. During the pandemic for example, we have seen a surge in tics developing in teenage girls, thought to be related to increased anxiety although more research is needed. It is worth mentioning that hormonal changes affect tics, taking extra care of TS during puberty and menopause is essential.

As with many suddenly emerging conditions people can feel desperate to get a diagnosis, assuming that with a diagnosis will come support and access to services that will improve quality of life. Sadly, this is not currently the case. For my colleague, Paul Stevenson he was told, he had Tourette Syndrome at the age of 46. He was given no information that day as to what to do next. No piece of paper with details of support groups. No advice on managing tic attacks, or physical exhaustion. No list of professional services that could assist in any way. He simply had to figure it out for himself. Of course this massively affected his ability to work and earn a living, his employer had no guidance on what to do to support, despite the tsunami of advice on Autism and Dyslexia, for example.

With this in mind today I have written about what has helped him, in the hope it might reach others who are unsure and in need of support.

Find Your Community

A sentiment that is echoed throughout the TS community is that finding their neurokin has been essential to their survival. When you develop tics it can become hard to go out, both socially and for essential reasons such as to do the shopping or go to work. This isolation is hard for most to cope with and so finding other people who you can relax around and that understand your experience is essential. Not only will reaching out help with mental health issues it can give access to all sorts of practical tips and advice from people who have been there and done that. In the UK Tourette’s Action can help you make those connections and they can also provide webinars and advice for employers, or Occupational Health advisors seeking specialist guidance.

Beyond the Tourette Syndrome groups, connecting with the wider neurominority and disability community can be of help – the clinical research and charity funding might be biased but the community is not. Neurodiversity groups are typically embracing of all neurotypes and when it comes to unpacking any internalised ableism you may have in yourself or your workplace we can help.

Access To Work

For some work may become an impossibility, but for those who can work there are ways to get back out there. In the UK we have a government run scheme that will assess your needs and provide solutions to the barriers that are preventing you from working. There are also many private companies that can offer this same service.  In some cases, workplace coaching may help to build back confidence and help you work out strategies such as the best time of day to focus or work on ways to explain TS in meetings, so that you feel less self-conscious. In other cases there are practical solutions to be found in terms of changing the environment or adapting the role slightly. It often helps for example to have a quiet place you can go to release tics if you feel unable to do this in the regular workspace. If adapting your old job seems impossible then it may be a good idea to consider a new career path that is better suited to your current needs but still plays to your strengths.

Similar schemes exist around the world, and Occupational Health professionals can also guide employers, but be sure to ask for a specialist if your referral does not understand TS, such as a work psychologist who specialises in disability adjustment. Check credentials of suppliers of support – are they insured? Do they control data? Are they qualified to provide HR advice? Can they demonstrate their own inclusivity as a business with appropriate representation of lived experience?

Capitalize On Strengths

When pursuing a diagnosis, it is easy to get bogged down by the medicalized view of neurodiversity. One that focuses in on deficits, leaving you lacking in confidence and unsure how to proceed. In order to move beyond this, those of us with spiky profiles can benefit enormously from learning what our skills are. To explain briefly, neurominorities have ability profiles with greater peaks and troughs than the statistical average. This means that while we have increased struggles, we also have increased strengths. Learning what these strengths are can be harnessed to give us a competitive edge in the world of employment and beyond, it can bring an employee back from hopelessness to ambition and growth. Seek out a neurodiversity aware occupational psychologist who can assess strengths, to balance all the negativity. As an employer, this is a fantastic gift and will be worth every penny in terms of engagement, allyship, loyalty, productivity, wellbeing and more.

Discussing this process recently with my esteemed colleague and friend Paul Stevenson he summed up his experience perfectly when he said: “diagnosis told me what was wrong with me, but positive assessment told me what was right with me”. After receiving his positive assessment he learned that he had excellent creative skills and realised his talent for photography, going on to receive awards for his work.

When you learn your specific skill set you can either use that knowledge to adapt the way you do your current job or seek out a new direction entirely confident in the fact that you are capable.

We Need To Do Better

An overwhelming message from this awareness month has been that greater access to diagnosis and support is needed. People are struggling alone, unaware of the help that exists and this needs to change.

Moving forward we need to start funding research and support at an appropriate level given the statistical prevalence of Tourette Syndrome.

Acceptance of TS by the wider public is essential. Treatments are not universally effective or available so the only way for many people with TS to live their lives freely is to be accepted for who they are without stigma or fear of how others will respond to them.

I hope that all of the advice above is useful and reaches anyone struggling to deal with or support someone with newly developed tics or a recent diagnosis.

If you are UK based, please help raise awareness of patchy healthcare coverage and services by signing this petition.

Read more of Nancy’s Forbes Blog here.