A few years ago an article was published in the British Medical Journal (BMJ) about the relationship between social media and increased instances of tics. I had significant concerns about the article which I wrote about here. I ended that post by saying:

“I understand the impulse for clinicians to theorise and share ideas with others, but I’d also ask that this be done with care… Clinicians’ opinions often hold a lot of weight so I ask them to be aware of this and be thoughtful about how their views might impact people’s lives.”

This call for care is as relevant now as it was 2021. However, one of the authors of the BMJ article, Tammy Hedderly, is apparently now leading on a series of new surveys that relate to the naming of ‘Tourettes Syndrome’. There’s one survey for ‘patients’, one for ‘parent/carers’ and one for healthcare professionals. I say ‘apparently’ because the information at the start of the surveys doesn’t say who is collecting the data, but I’ve seen Tammy named in posts sharing the links.

These surveys have been causing deep concern within Tourettes communities and I can understand why. Anecdotally there’s a long history of doctors, particularly those who work with children, being reluctant to diagnose Tourettes Syndrome, even when the person meets the criteria, instead favouring a general term like ‘tic disorder’. My understanding is that practitioners who favour this approach do so because of their perceptions about the ‘stigma’ of a Tourettes diagnosis. Personally, I’m not a fan of this approach – in my view we should be working to change the ‘stigma’, not the diagnosis or the name. I’ve supported many families who’ve struggled to access support because of confusion around the diagnosis they’ve been given.

I’m concerned about how these surveys might be used, and about their wider impact. So, I’m going to explain my worries point by point.

The Language and Framing of The Surveys
The three surveys seek to canvas opinions on ‘Voices on Tourette Labelling’. The term ‘label’ has a tricky history in relation to disability and neurodiversity as it’s sometimes used by those who wish to diminish or dismiss a diagnosis. I don’t think that’s the intent here, but it certainly doesn’t feel like a neutral term to me. The survey for healthcare professionals asks contributors to share their ‘expert opinion’ while the one for patients says the purpose is to ‘learn how to make things better and hear your voice’. This phrasing assumes there’s a problem that needs to be solved. My guess is that the questions were only set by medical professionals, if so, having a broader range of people involved might have helped catch these issues before the study went public.

Survey Accessibility
I wasn’t able to find information about this study in Easy Read, so these surveys may not be accessible to some people. They also use complex language, including words like ‘nomenclature’ which I had to look up (it means the choosing of names for things). Many people with Tourettes will have co-existing conditions, so ensuring surveys are accessible is essential. It’s also worth noting that there’s no closing date, nor any detailed information on how the data will be analysed or used, which might put off some potential contributors. I’m not sure how it works from a GDPR perspective either!

Whose Priorities Are Being Centred?
Language matters – it guides how we think and feel. Lots of the language around Tourettes has historically come from medical professionals’ observations of us, so it reflects external rather than internal perspectives. I’d be really interested to explore the words people with Tourettes might use to describe our experiences.

Sometimes there’s a good reason to change the name of a condition, for example Asperger’s Syndrome was named after a eugenicist, so the rationale for changing the name was clear. Personally, I haven’t seen any community discussion reflecting the desire for a name change. I’ve only come across it as a concern amongst health professionals. And it’s not a new area of research – a decade ago some clinicians proposed re-grouping and renaming Tourettes to include subsets called Tourettes Plus and Pure Tourettes Syndrome. Thankfully these didn’t stick.

Putting a Load of Work In The Bin
Tourettes is a complex multi-faceted condition and there are many myths associated with it. A lot of work to increase understanding of Tourettes Syndrome has happened in the UK and internationally. Changing the name risks adding confusion and undoing this work. If I tell someone on the phone I have Tourettes, most people understand what this means. But if I say I have ‘Primary Persistent Tic Disorder’, I wonder how many people will get what I’m talking about?

But it’s not just the public’s understanding of Tourettes that’s important – it’s also key to many of the systems we might need to utilise including: benefits, social care, Access To Work, education, and non- specialist healthcare practitioners like GPs, physios, and Occupational Therapists. I’m concerned that the wider implications and risks of a name change have not been thought through.

Complicating Access to Support, Understanding, and Services
I’ve spoken to families who’ve described how a ‘tic disorder’ or ‘tic spectrum’ diagnosis has prevented them from accessing both formal and informal support, or how the response to this from teachers or family members has been: ‘so they don’t actually have Tourettes then?’ Whenever Touretteshero put on an event, we make it clear that anyone with tics can come, but we know that those without a Tourettes Syndrome diagnosis often think they should check first.

My diagnosis gave me the opportunity to learn about myself, it gave me access to language, understanding, and community. I’m worried that having multiple terms adds layers of confusion and means people will find it harder to find these life-enhancing networks and tools.

Dividing And Complicating Community
Another element of concern is the risk of dividing our communities. What the ‘stigma’ clinicians are probably worried about is the association with certain types of tics, particularly ‘coprolalia’ (swearing tics). Sometimes the effort that goes in to correcting the myth that Tourettes is ‘just swearing’, complicates how those of us with these types of tics feel. My experience of Tourettes communities is that they’re warm, kind, and inclusive, and I’d hate for anyone to feel cut off from this vital source of knowledge and support, either because they don’t have a Tourettes diagnosis or because they have tics that are perceived as problematic.

The Terms Discussed
The names put forward in the survey, other than Tourettes Syndrome, broadly fall into three categories. These are:

1 Names with spectrum in the title (Tic spectrum, Tourette spectrum, Tourette spectrum disorder). My concern about ‘spectrum’ is that it could be interpreted in a simplistic way as meaning ‘mild to severe’. Tourettes doesn’t work like that, and tics can change dramatically over time. I can understand why it might appeal to some, and personally there are things I like about it, specifically the opportunity for it to include our whole community.

2 Names with tic in the title (Chronic Motor and Vocal Tic Disorder, Tic Disorder, Tics, Primary Persistent Tic Disorder). Tic disorders already exist as a diagnostic term for those who don’t yet meet the criteria for Tourettes. My issue with any name that includes the word ‘tic’ is three-fold – there’s more to Tourettes than just tics, it’s easily misunderstood as being about the insect ‘tick’, and finally the association with ‘nervous tics’ is pervasive and inaccurate.

3 Neurodiversity – this is a general term, not linked to any specific condition, which expresses the idea that we are all neuro-diverse, and that all brains work differently. While this is a useful idea, it’s not one that describes a specific set of symptoms or experiences.

Power and Powerlessness
My final worry, and it’s the most fundamental in some ways, is about who holds and utilises power. I’ve put all other plans on hold today to write this post. I needed to voice my concerns because I know that the clinicians currently have the power. They’re listened to more readily than those of us with tics and Tourettes. The reality is, if clinicians decide to change the name tomorrow, as some already seem to have done, those of us the condition would struggle with the numerous impacts this would have.

It’s a surreal experience to know that something that affects every area of your life can be changed at the whim of someone who doesn’t have to live with impact. I don’t think there’s an intention to disempower people with Tourettes and our families, but putting forward alternative names, with limited context means this is a likely outcome.

I suspect whoever put the survey together knew this too, given that only on the ‘patient’ survey does it say ‘Please rest assured we are not trying to change TS nomenclature at the moment’ – the ‘at the moment’ doing a lot of work in this sentence! This isn’t just a UK issue – as the Tik Tok Tics piece in 2021 showed, research and the media’s reporting of it can have a huge impact globally.

This post is written from my perspective as someone with lived and professional expertise, having worked for a CAMHS (Child and Adolescent Mental Health Service), been part of a multi-disciplinary team within social care, and having over 20 years of experience supporting families raising disabled children.

Health care professionals are valuable and have key roles to play, but I go back to my point from 2021 and ask them, clinicians, and researchers to recognise the differences in power and privilege and to please tread carefully. People with Tourettes have insight and expertise that could enrich your research. I’d love to see more collaboration and recognition of the knowledge and expertise held within Tourettes communities. Fundamentally this is an issue of trust, we need to be able to trust that you’ll value our perspectives.