Neurodiversity in Academia: Time to rethink Tourette’s syndrome

Laura: I always bring up the statistic that 86% of people with Tourette’s have other diagnoses such as ADHD, OCD, autism spectrum disorder or depression and anxiety. I just think that if the co-morbidities are that high, at some point you have to acknowledge that Tourette’s may include a whole range of things. For me, there are concentration, executive function and sleep issues, but also sensitivity to depression, to anxiety, to fabrics, to things that people say… sensitivity to both over- and under-stimulation. The tics, they’re maybe 10th on the list of my Tourette’s-related problems. There's nothing inherently wrong with having tics. They can be annoying, and they can cause a lot of physical pain but I have ways to control that, like Botox injections or physical therapy.
Diana: Tics are also sort of an onlooker’s thing – the disturbance happens in the person who sees them and is confused. Do they need to interpret the tics? Are the tics a genuine expression of something the [Tourettic] person wants to say or do? No – the tics don’t mean anything. They may be in reaction to something that happens in the environment, but they aren’t intentional.

Diana: This is fairly new, and it hasn’t been accepted to the same level as autistic or ADHD neurovarieties within the movement itself. Tics look more ‘biological’. From the outside they seem less related to psychological, social, or behavioral processes; it’s more difficult to claim tics as an expression of identity. But during the pandemic – and a little bit before – there was this wave of Touretters on social media who wanted to normalize Tourette's, who explained what it meant for them, what it looked like, and the problems caused by trying to hide it. People were saying “I just want to be me”, and that goes against this clinical model of Tourette’s that says that your brain is broken – so take medication, do behavioral therapies and hide your tics, because when you hide them you're considered an improved person.

Laura: I understand that medical professionals have to look at tics to make a diagnosis, but I don't like that the conversation stops there. In my job, when we meet with Tourettic kids for the first time, we always ask “what does Tourette’s look like for you?”, like you did. And without fail, kids answer “well, I have this verbal tic and that physical tic”. We have to keep asking specific questions to get the whole picture, to probe what other type of problems they may also be facing. And sometimes, I'll have a kid who, to me, clearly seems to be on the spectrum or have ADHD-related issues, but there isn’t a diagnosis. If you only focus on the tics, if you don’t let people know what else could come with them, there is a big chance you’ll miss other issues which create tension – and less tension means less tics.

Diana: Researchers who want to make a claim about Tourette’s have to focus on tics, because that’s what is considered to set Tourette’s apart from other neurodivergent or mental health conditions; or the people included need to have very clear tics – so the population you can do research with becomes rather small.
Laura: In our ‘Tackle your Tics’ study, for example, everyone in our research group initially agreed for the primary outcome to be quality of life but then it wouldn't have been Tourette’s research. We had to opt for tic reduction instead and use the Yale Global Tic Severity Scale, which I don’t like but is the gold standard. Because we had to use this tool, the results don’t fully capture what we were trying to achieve or the benefits of our interventions.

Laura: I think a lot of research starts from the perspective of the researcher and what they find to be an interesting topic. Then money gets put into it before checking whether that research question is really of value to the people living with Tourette’s. That may be a bit black and white, but that's how it feels sometimes. Right now, I’m 20 weeks pregnant, for example, and I don’t have a lot of tics. I discussed this with my neurologist, and she went: “OK, can we figure out why that is?” I think this is how research topics should emerge. If you look at how Diana came to her PhD question, we had lots and lots of discussions and she piloted all her methods on me.
Diana: With patient consultancy, often what happens is that researchers give people a survey to sort of ‘confirm’ they got the research question right. But the issues people want researchers to focus on may not be anywhere near that limited set of options.
Laura: I feel like many academics still think it's not possible to involve patients within research at the highest level. Just because we have Tourette’s doesn’t mean we can’t be highly educated; and Touretters are and can be skilled researchers – it’s not mutually exclusive.

Diana: We recently published a paper that proposed bringing experiential knowledge into clinical work. Editors and reviewers really struggled to accept that research could take place outside the medical model of Tourette’s; I think what made a big difference was that the last review came from a researcher who disclosed being Tourettic, and who was very positive. But it was a fight in so many ways. Even later in the process, the proofreader tried to correct ‘Tourettic people’ to ‘patients with Tourette's’ in the manuscript and we were like… “No, that's part of the article. That's not a coincidence”.

Diana: Most of the research conducted on Tourette’s is very biological, it’s about neurotransmitters and brain structures; with a few notable exceptions, there is little social sciences and humanities research. At home, I saw my sister touching specific things in a certain order, standing here and not there, having to do this but not that, and there was no explanation for it. She went through this whole medical circus to get diagnosed, but all this tapping and touching wasn’t addressed because it shows up in the family home, not in a hospital or a doctor’s office. So, I decided to look into how these interactions were shaped by the environment.

Laura: I was surprised! For a long time, it felt like our mom and I were the only ones interested in Tourette’s in our family. Our dad would bring us to community events and then pick us up, but he wouldn’t stay. The way Diana describes it, I kind of lived in a bubble and she felt she couldn’t get to me because the Tourette’s was standing between us. I was very depressed in my teens; I was trying to be safe and I wouldn’t let anyone in, so I understand why she felt that way. Around the same time she came up with her PhD idea, I had started wanting to do more within the Tourette’s community. I got invited to speak in Athens for an ESSTS meeting, and I thought, why not go together? Something clicked there. I gave my talk and it was so well-received that they arranged for it to be held again at the primary conference. It showed me I had a voice people wanted to hear, but it also changed a lot of things in our relationship.
Diana: Watching Laura give her talk is when I realized that Tourette’s was part of her, that it was simply a difference which deserved studying like any other type of experiences; it wasn’t standing between us, because the two weren’t separate from each other. Also, this was one of the first times I saw just how powerful she was as a Tourettic person – and not a victim, which was what she had been constructed as over years of medicalization.
Laura: You also videotaped the speeches and our dad watched them. He is not an emotional person at all; he didn't say anything about them. But when the National Tourette’s Day came a couple of weeks later, for the first time he wanted to be at one of the events – the Dutch Tourette’s Association said they were at full capacity, but my mom told them “I don’t care. He is coming.” This was too important to let slide. He’s a very opinionated person, but now I hear him give advice to people about Tourette’s based on what I tell him.

Laura: Yes, for several years I worked towards bringing advocacy groups from different countries together at a European level. I’m very happy that there’s now a worldwide group with the same goals. We would meet yearly at the ESSTS meetings, where we had our own program and tried to advocate for patient perspectives with the attending academics. Nowadays I focus on patient advocacy in other ways, like taking part in advisory boards.

Diana: A paper came out during the pandemic suggesting that people on social media were faking having Tourette’s for attention. That it was basically ‘mass hysteria’, that Tourette’s didn’t look like that. It got very disrespectful. And they have this huge formal, established platform as academics, they can be cited as neutral and objective while the Tourette’s community only has people on social media who are not really connected to each other. There was no crosstalk. Only a handful of researchers, like Dr Christine Conelea, worked with community members to publish rebuttals in academic journals.
Laura: For example, from our perspective, it made all the sense in the world why many of the people who got newly diagnosed were teenage girls but somehow it didn’t fit their narrative.
Diana: White boys tend to be overrepresented in Tourette’s research, so their tic profile dominates what Tourette’s looks like. White girls, women, and minority ethnic people disguise their tics more and are more likely to have other Tourette’s-related problems.
Laura: Lived experiences tend to be dismissed in academic conversations. If you’re in the ‘patient’ box, there is a belief that you can’t be highly educated or make rational contributions. When I was working as an advocate on the European level, I was told multiple times that ‘we as patients’ couldn’t fully understand the research, that patient representatives could only convey their own experiences even though we’d met hundreds of Touretters through the years. I felt I had to make myself small if I wanted to speak up.

Diana: I hope it revolves much more around how Tourette’s manifests in everyday life, and that neurological studies start to examine the brain outside of the laboratory. And I’d like to see Touretters being able to ask questions about themselves that they’ve been discouraged to raise until now. For me, being truly inclusive also requires seeing the experiences of Touretters as valid data which reflects important issues in society, and which can inform policies that take into account human differences.
Laura: I agree. I think Tourette’s research should focus more on the big picture, not just tics, and I hope we can work towards updating the current research scales and questionnaires to reflect this. Involving Touretters in all aspects of research should be a fairly easy starting point, in my opinion. All the researchers who have done so seem to confirm that it’s the way to go. Hopefully, this will help other academics trust that we aren’t there to make it harder on them, but to make their work better for everyone. In the end, it’s all about people being happy with who they are and being able to enjoy their lives.