Can the Neurodiversity Movement Make Space for Tourette's? Dialoguing Lived Experiences and Theory

Abstract

Increasingly, people include Tourette's alongside autism and ADHD in lists of conditions fitting under the neurodiversity umbrella. In this study, we take a step beyond mere discursive inclusion. We critically examine whether Tourette's can also find a space in the neurodiversity movement in a more theoretical and political sense. Do Tourettic lived experience sufficiently match with the aims and methods of the movement which has been historically built on autistic experiences? We engaged in a back-and-forth dialogue between lived experiences of six Tourettic adolescents (age 14–17) and existing discussions in neurodiversity studies. The empirical data stem from an in-depth interview study, reanalyzed through the lens of the current research question. Three themes emerged (1) the (in)visibility of tics and the role of onlookers in experiencing Tourette's, (2) negative aspects of tics and desiring Tourette's to disappear and (3) benefits and complexities of establishing Tourettic community. Key insights of the autism-centered neurodiversity movement (camouflaging, socially embedded take on disability, value of community building) prove helpful in theorizing Tourette's. Other Tourettic experiences fit less well (Tourette's as visible disability, inherent downsides of tics including distraction and pain, complexity of community building given suggestibility of tics). We argue the neurodiversity movement cannot expand its scope without actively making space for the lived experiences and demands of new constituent groups such as Tourettic people. Among others, a reconsideration of strong anti-cure positions is needed and previous writings regarding the inclusion of chronic illnesses in the disability movement provide helpful insights here.

Lay Abstract

When people list conditions that fit under the neurodiversity umbrella, they often mention Tourette syndrome. Much of what is written about neurodiversity though, stems from autistic experiences. Therefore, we examine in this study to what extent the neurodiversity movement's ideas match well with the experiences of people with Tourette's. Concretely, we analyzed six interviews with Tourettic youth (14–17 years). Three themes were important. First, more than autism, Tourette is a fairly visible condition and the role of onlookers matters a lot. Second, tics can also have negative aspects, in and of themselves. This is irrespective of the social context and includes experiences of pain and distraction. Lastly, people find support among other Tourettic people, but building community is also difficult as people tend to take over each other's tics. We discuss how important insights from the autistic-led neurodiversity literature are also helpful to think about Tourette's. This includes concepts such as camouflaging, the role of social and environmental contexts in shaping disability and the value of community building. But we also note important points of contrasts with dominant ideas in the neurodiversity literature. Most notably, tics have certain inherently negative aspects that make people want to wish those tics away. This leads us to call on the neurodiversity movement to deal carefully with the actual experiences and demands that potential new groups in the movement might hold, including a reconsideration of strict anti-cure positions.

Introduction

Tourette syndrome, colloquially referred to as Tourette's ¹ , is clinically operationalized as the presence of multiple motor tics and at least one vocal tic. Raising one's eyebrows and clearing one's throat are typical examples of motor and vocal tics, respectively. Tics typically first appear during childhood. Type and frequency of tics tend to wax and wane over time with a tendency to decrease during adulthood. There is, however, notable individual heterogeneity in the course of tics and Tourette syndrome is generally considered a chronic condition. In the current clinical operationalization, tics should be present for at least one year and should have started before the age of 18 for a diagnosis of Tourette syndrome to apply (American Psychiatric Association, 2013; Johnson et al., 2023). The population prevalence of Tourette's is estimated around 0.5% with higher occurrence among males and adolescents (Jafari et al., 2022; Scharf et al., 2015).

For many people, Tourette syndrome is easily associated with prolific use of swear words or coprolalia. With prevalence rates in clinical populations going up to 28%, this phenomenon is however certainly not to be seen as synonymous with Tourette's (Sambrani et al., 2016). Besides coprolalia, a tendency for non-obscene socially inappropriate behaviours has also been described among people with Tourette's. Non-obscene socially inappropriate behaviours are characterized by the involuntary impulse to make insulting or inappropriate comments or actions related to an individual or a situation. Such manifestations, together with motor and vocal tics themselves, can contribute to the disablement experienced by Tourettic people as they often stand out in public in ways that are experienced as weird or disruptive by others attracting social scrutiny (Eddy & Cavanna, 2013).

Traditionally, Tourette's has been considered a neurological pathology, characterized by a deficit of inhibition or control which can be biologically pinpointed in specific brain circuits, involving the basal ganglia (Singer & Augustine, 2019). Clinical research on Tourette's has focused on finding ways to suppress tics as a main pathway to improve quality of life of Tourettic people. This involves behavioural, pharmacological or neuromodulatory interventions (Johnson et al., 2023). In recent scholarship, however, attention is shifting to Tourettic lived experiences, and the complicity of the environment in eliciting tics and causing disablement (Bervoets et al., 2023; Malli et al., 2019; Malli & Forrester-Jones, 2025b). These changes echo some of the more established shifts in autism research, influenced by the neurodiversity movement (Pellicano & den Houting, 2022).

Two recent academic discussions have opened the debate on whether Tourette's can or should be considered from a neurodiversity perspective and what such an approach would entail (a first discussion initiated by Bervoets et al., 2023 with reactions by Ne’eman, 2023 and Jones, 2024; and a second discussion initiated by Graber & Rizzo, 2024 with a reaction by Dure & Albin, 2024). We will present these debates below. But apart from these discussions, there has been little scholarly attention to neurodiversity approaches to Tourette's.

The Neurodiversity Movement and Tourette’s

The concept of neurodiversity recognizes the significant human diversity regarding cognitive, sensorial, behavioural, emotional and communicative ways of experiencing and engaging with the world. The neurodiversity movement, qua social movement, strives for acceptance of such diversity and emancipation of neurodivergent minorities against the backdrop of a society organized to meet neurotypical needs. Opposition to biomedical efforts at preventing or curing conditions such as autism has been key. In academia, the neurodiversity paradigm equips researchers with a critical lens to decenter neurotypical norms and produce relevant knowledge from the neurodivergent margins (Dwyer, 2022; Vanaken, 2023; Walker, 2021).

Early on in establishing the neurodiversity movement, it was anticipated neurodivergent people would represent a new addition to the familiar political categories of class, gender and race, augmenting the insights of the social model of disability (Singer, 1998). And indeed, since its origin in the 1990s, a wealth of academic literature, advocacy and activist labour has been delivered to extend the existing work in disability studies and movements (Bertilsdotter Rosqvist et al., 2020; Kapp, 2020a; Walker, 2021). It should be noted though that the roots of this neurodiversity movement are largely situated in autistic communities and in the preceding autism rights movement (Botha et al., 2024; Dekker, 2020; Pripas-Kapit, 2020). Most theoretical work in neurodiversity studies has therefore been built on and applied to the experiences of autistic people, rather than on a more heterogenous set of neurodivergent experiences. In this light, much has been written, for example, about the complexities arising from the fact that autism is a relatively ‘invisible’ disability compared to many physical and sensorial disabilities. This involves discussions on the role of formal clinical and/or self-diagnosis as a form of recognition of difference, on the balancing act of disclosing one's diagnosis to others and on camouflaging one's autism characteristics in certain situations to be perceived as ‘normal’. While these discussions are undoubtedly a valuable addition to the field of disability studies, it remains to be seen whether they are equally relevant for neurodivergent experiences beyond autism.

In the past years, indeed, there have been repeated calls to apply neurodiversity approaches not just to autism, but to other conditions traditionally seen as neurodevelopmental disorders (Campbell, 2020). For example, in the opening chapter of the pioneering edited volume Neurodiversity Studies: A New Critical Paradigm, the authors point out:

it is even harder for ADHDers, Dyslexics and those with Tourette's to be included on the academic discussions of neurodiversity because of (…) stigmatisation. For this reason, it is essential for neurodiversity studies to consider all neurodivergent differences and not to exclude types of neurodivergence that are seen as less culturally palatable (Bertilsdotter Rosqvist et al., 2020).

This call to ‘consider all kinds of neurodivergent differences’ touches squarely on a key point of debate in the neurodiversity literature and sparks a range of follow-up questions. How widely does the neurodiversity movement casts its net in defining neurodivergence, asks Ginny Russell in her closing chapter of Autistic Community and the Neurodiversity Movement (2020).

Does it include just people with autism and other neurodevelopmental conditions like ‘people with autism, dyspraxia, ADHD,’ (…) or does it further include people with depression, schizophrenia, Tourette's, psychopathology (…)? In this case neurodiversity should be inclusive of neurodegenerative conditions like dementia, and Parkinson's too. The problem is the boundary around who is ‘in’ the neurodivergent class and who is ‘out’ is currently not transparent or well-defined (Russell, 2020).

Ne’eman and Pellicano (2022) indicate there are broadly two roads ahead. Either the movement takes an ‘all-inclusive approach’, considering all kinds of neurocognitive and mental health conditions as neurodivergences. This way, the neurodiversity movement would be understood as an application of disability rights and theory to mental conditions, without adding much specific or new insights of its own. Another, more selective approach, would safeguard the neurodiversity's movement specific ideas. In this approach, the neurodiversity movement would bind those groups of people together who share ‘the rejection of the demand for typical appearance, cognition, or behavior – that is, the movement's rejection of the goals of prevention and cure’ (ibid, p.153). Ne’eman and Pellicano briefly consider obsessive-compulsive disorder (OCD) as an example. They suggest the selective approach to neurodiversity would restrict OCD to be conceived of as neurodivergence since obsessions and compulsions are often experienced as sources of distress that welcome clinical intervention. More recently, an empirical paper by Long et al. (2024) came out providing some depth to this conceptual discussion. In this in-depth interview study, autistic adults with co-occurring OCD explained the marked, experiential differences between the so-called repetitive and restricted behaviors and interests versus OCD manifestations. Reportedly, obsessions and compulsions felt more as intruders to the self, as ego-dystonic, and fed into cycles of anxiety. Stimming, insisting on sameness and spending time on special interests though were considered part of their identity and played a role in soothing anxiety. Preferences regarding clinical intervention were not described explicitly in this study (Long et al., 2024). Yet, we believe it is a fair assumption that the distinct phenomenology of autistic versus OCD features could form the basis for different political positions regarding desirable care practices. Whether this means that OCD can or cannot be considered a neurodivergence remains up for discussion.

What this example also hints at, is that there is a difference in understanding neurodivergence as a descriptive umbrella term compared to neurodivergence as a shared characteristic for a political movement. As a descriptive umbrella term, neurodivergence is currently already used in a fairly broad and loosely defined sense. Across the web, bloggers and advocates tend to list OCD and Tourette's as neurodivergences, mentioned alongside conditions such as bipolarity, borderline personality and many others, often without giving a clear rationale (List of Neurodivergent Disorders, n.d.; What Are The 11 Types Of Neurodivergence?, n.d.; What Disorders Are Considered Neurodivergent?, n.d.).

But if we look at neurodivergence as a shared identity characteristic providing a basis for political action, we believe such boundary issues become more relevant. As touched upon above, obsessions and compulsions’ distinctive phenomenology could arguably lead to less strict anti-cure positions among OCD people compared to the views held in autistic communities. By consequence, we believe the neurodiversity movement cannot expand the group of people it represents beyond autistic folks without genuinely engaging with the experiences of otherwise neurodivergent people and the potential differences in political positions that might arise from these experiences.

This is where this paper hopes to make a contribution: we will analyze Tourettic lived experiences and bring them in dialogue with existing neurodiversity theory with the aim of exploring whether and, if so how, space can be made for Tourette's in the neurodiversity movement.

Research Questions and Methodology

As detailed below, our approach is not to introduce some kind of definition for neurodivergence as a mere descriptive, umbrella term and subsequently test whether Tourettic lived experiences fit in. Rather we will engage in a back-and-forth dialogue between key tenets and insights of the autism-centered neurodiversity movement and Tourettic lived experiences. To what extent can experiences of Tourette's find a place in this neurodiversity movement and benefit from neurodiversity theorizing? But also, if the movement wishes to include people with Tourette's, how can it actively make space for them?

Throughout this dialogue, we aim to learn which neurodiversity tenets and insights are relevant to theorize and politicize Tourette's and to find which Tourettic experiences do not line up well with currently dominant tenets of the neurodiversity movement, potentially requiring amendments in the movement if inclusion of Tourette's is sought.

There are a number of reasons why we believe these questions require attention. First, as mentioned, there is the ongoing shift in Tourette research paralleling some of the changes in autism research under influence of the neurodiversity movement. Is it worth continuing this shift and deploying neurodiversity discourse and theory in relation to Tourette's? Second, in about 90% of people with Tourette's there is a co-occurrence of conditions contributing to the lived experiences of Tourettic people. This includes conditions already considered neurodivergences, such as ADHD and autism (Robertson et al., 2017). As far as it makes sense to separate these conditions on the experiential level, it raises the question whether Tourette's can also be considered a neurodivergence. And lastly, to rehearse an important point, a significant amount of advocates, activists and academics with Tourette's already actively consider it to be a neurodivergence (Doyle, 2022; Rose, 2023), citing it among autism, ADHD and learning difficulties, often without critically reviewing what such discursive inclusion of Tourette's would imply for its political inclusion in the neurodiversity movement.

Scholarly Debate on Neurodiversity and Tourette’s

As said, to our knowledge there is little scholarly work yet on the topic, except for two recent academic debates which we will briefly represent.

The impactful medical journal Neurology featured a review article warning neurologists for potential criticism of Tourette's patients towards their doctors, inspired by the neurodiversity movement's alleged ‘anti-therapy’ attitude (Graber & Rizzo, 2024). To move beyond a mere theoretical discussion on whether Tourette's should be viewed as disorder or as neurodivergence, the authors call for more research which empirically tests key claims of the neurodiversity movement. This could involve, for example, research that investigates social determinants of quality of life among people with Tourette's (ibid). In a critical, editorial response to this piece, Dure and Albin (2024) called this even modest proposal as ‘pushing through the wrong, open door’. Current clinical practice does not simply qualify Tourette's as an individual pathology to be treated, they say. Therefore, the distinction between neurodiversity versus pathological approaches would be an unhelpful oversimplification. Much remains to be unpacked in this discussion. But clearly, debates on neurodiversity made their way to Tourette's research and practice.

The Developmental Medicine and Child Neurology journal featured another discussion which helpfully laid out some important contours of the debate at hand. Here, Ne’eman (2023) welcomes Bervoets et al. (2023) suggestion to adopt a neurodiversity approach to Tourette syndrome in line with shifts in autism research: moving beyond a mere individual deficit based view, centering first-hand experiences (both positive and negatives ones) of Tourettic people's and attending to the complicity of social and physical contexts in eliciting tics and disablement. Yet, Ne’eman signals that there is more than one critical discourse on offer for Tourettic people. He hints for example at the mental health recovery movement, where advocates – differently from autistic neurodiversity proponents – frame conditions such as psychosis sensitivity and bipolarity as distinct from their self-identity, being more open to forms of clinical intervention targeting core aspects of their condition. In the spirit of self-determination, Ne’eman concludes it is up to Tourettic communities to debate and decide where they want to position themselves: ‘if this community decides to count themselves as part of neurodiversity, they will be welcome’ (p. 1416).

In response, Jones (2024) warned against the urgency implied in Ne’eman's letter for Tourettic people to make a categorical decision on how they want to identify: as neurodivergent, as disabled, as a mental health recovery advocate or otherwise. Experiences and opinions on the matter vary much within the Tourettic community and even within an individual. Identity is in flux, Jones points out. And he claims it is beneficial for Tourette's to identify with different labels, discourses and movements at the same time, depending on the context. ‘For me, this means that on some days I identify with neurodiversity and on others I feel very much disabled – both are key terms in allowing me to understand my own body and experiences as someone diagnosed with Tourette Syndrome’ (ibid, p. 816).

Purpose of This Paper

We are interested to see what neurodiversity theorizing can offer for people with Tourette's and how Tourettic experiences can potentially expand, amend or qualify existing neurodiversity theorizing. Yet, again, our goal is not at all to police the boundaries of neurodivergent identity or to make a final call about whether Tourettic experiences should find a place in the movement. We agree with Ne’eman (2023) this is most of all up to people with Tourette's and neurodiversity community organizers to decide. Our intention is merely to feed the ongoing debate in a nuanced way. Yet, we disagree with Ne’eman on the following: he seems to conceive of the neurodiversity movement as something static. He presents a movement with established ideas that new constituencies must buy into to be included. Either you agree with the current tenets and insights of the movement and then you are welcome (as Tourettic community) or you disagree and then there are other social movements in the realm of disability and mental health to go to (Ne’eman, 2023).

Our take is more dynamic and fits with Chapman's (2020) suggestion to see the concept of neurodivergency as ‘a moving target’ in the sense that it can change over time as it is being mobilized in practice. And also, that the concept should most of all be ‘epistemically useful’, meaning it should help access and produce meaningful knowledge (ibid, p. 219). Indeed, we are less interested in what neurodiversity movement exactly is in terms of its core claims and boundaries. We are rather interested to explore what neurodiversity theory and the neurodiversity movement can possibly do for people with Tourette's: how can neurodiversity ideas help theorize the experience of tics and foster Tourettic emancipation? The other way around, we are curious to learn what Tourettic experiences can do for the neurodiversity literature and movement: which challenges and new insights does it pose for this body of literature that has largely been developed based on autistic experiences?

Methodology

To engage with these questions, the overall methodological approach in this paper entails a back-and-forth dialogue between empirically documented Tourettic experiences on the one hand, and existing, theoretical neurodiversity and disability literature on the other hand. Concretely, we re-analyzed and discussed the findings from a previous interview study we conducted with adolescents with a diagnosis of Tourette syndrome, from a neurodiversity perspective. As described in more detail elsewhere (Mulkers & Vits, 2023), six adolescents between the age of 14 and 17, three girls and three boys, took part in individual, in-depth, semi-structured interviews. Participants were recruited via the database of the Child Psychiatry department situated at the University Hospitals in Leuven, Belgium. Three interviewees received their diagnosis of Tourette syndrome in the same year as the interview took place (Interviewees 3, 5, 6). The other were diagnosed between one and six years before. A documented IQ under 80 and the co-occurrence of a language disorder were adopted as exclusion criteria to assure participants could take part in this traditional in-depth interview set-up. Other co-existing diagnoses were not documented for this study and did not offer grounds for exclusion. The interviews were conducted online (n = 3), in the hospital (n = 2) or at the participant's home (n = 1) according to participants’ preference. The interview focused on the original, more general research questions of how adolescents experience their diagnostic label of Tourette syndrome and how their tics manifest in different social settings ² . The full interview guide can be consulted in the original report (ibid). The interviews lasted between 28 and 84 min and audio recordings were transcribed verbatim in full. Mulkers and Vits conducted an initial thematic analysis of the data under supervision of JSt, KH and JB. GJV and JSe were not initially involved. The Ethics Committee Research UZ/KU Leuven and UPC KU Leuven approved this study (S65583); the re-analysis of the data fell within the scope of this initial approval.

Given our stated interest in the question whether and, if so, how Tourette's can find a place in the neurodiversity movement, we brought together a multidisciplinary, neurodiverse team to conduct a second analysis of the findings. The team consisted of people with mixed professional backgrounds including medical doctors, philosophers, disability scholars and psychologists. While some of us identify as neurotypical, others have lived experiences of autism, ADHD and/or Tourette's. All team members re-read the interview transcripts and during multiple collective sessions, we discussed among each other how experiences described by these Tourettic adolescents might be fruitfully theoretically contextualized using concepts from the existing neurodiversity literature. Also, we discussed how certain experiences diverged from the ones commonly described in autism-centered neurodiversity scholarship. Team members’ first-hand neurodivergent perspectives were discussed explicitly and inspired the conversations.

Given the relatively small number of interviewees, we cannot and do not want to make a general conclusion on the Tourettic experience in relation to the neurodiversity movement. Also, the data analysis process for the current study was started from scratch and included two team members previously uninvolved. The first author, previously uninvolved, proposed the design of the current study upon reading the report of the initial study. Yet, we cannot rule out that pre-existing knowledge of the initial interview data among other team members influenced the design of the current study. Altogether, we do believe, however that our re-analysis of the experiences shared by these six Tourettic adolescents provide a valuable starting point for further discussions on Tourette's as neurodivergence.

Main Findings

Three main themes arose from our re-analysis of the interviews: (1) the (in)visibility of tics and the role of onlookers in experiencing Tourette's, (2) negative aspects of tics and desiring Tourette's to disappear and (3) benefits and complexities of establishing Tourettic community. As said, it is not our ambition to describe the full experience as shared by our interviewees, nor to universalize these experiences to all Tourettic people. We looked for and described key aspects that help us engage with our research question: how can neurodiversity theory and Tourettic experiences are mutually informative for one another?

Feeling Seen: (in)Visibility of Tics and the Role of Onlookers

‘There is always that split second when they stare at you strangely. And then they realize: “ah, she must have tics”. I don’t like that first look, when they’re wondering why I have tics’ (Interviewee 3)

The autism-focused neurodiversity movement is often described as a recently developed wing of the broader disability movement that highlights less visible or hidden developmental disabilities (Smith, 2022; Zalis, 2023). In nearly all our interviews with adolescents with Tourette's the visibility and audibility of their tics stood out, though, as a key element of their experience. In many cases, motor and vocal tics elicited reactions from onlookers. Tics were being stared at, frowned upon or commented on. For all but one adolescent, this evocative character of tics led to an ongoing awareness of having to manage their tics actively when in public. ‘I have to act normally’ (Interviewee 4).

According to our interviewees, tic management can involve concealing or suppressing tics. Management tactics include self-distraction, focusing on something else and physically obstructing tics, for example, by sitting on their hands or clenching their teeth. To evade negative reactions on tics some adolescents also discussed that they moved out of certain spaces to tic in private or that they avoid certain social contexts preventatively. Obviously, not all tics can be concealed, suppressed or postponed as the circumstances do not always allow this and because it takes energy to manage tics this way. In some cases, managing tics also meant accepting that one simply has to tic in the presence of others. ‘At school, I can’t do it (i.e., suppressing tics) anymore, I am there too long, eight hours a day. So yeah, there I just tic’ (Interviewee 3).

The way ticcing visibly in public is experienced by the interviewed adolescents depends much on how tics are reacted to. Whether or not onlookers are people that can be trusted seemed to matter for several adolescents. ‘It feels shameful, although it doesn’t need to be that way. (…) Tics are something personal. So, I don’t like to have them in class. So, I let myself tic only with people I really trust and where I feel comfortable, unless I can’t stop them anymore’ (Interviewee 1). Sometimes, the desired reaction from others is simply not to react, while in other cases supportive action, such as holding their hands, or assisting them to a quiet space, is welcomed. A trusted onlooker who makes ticcing in public feel less burdensome is an onlooker who manages to avoid being overly worried or dismissive towards banal tics, while not ignoring harmful or personally disturbing ones. Becoming a trusted onlooker requires to get to know the person who tics. ‘You noticed that it took some time for teachers’, shared an adolescent who changed schools recently. ‘They were like, oh, she does this (i.e., ticcing). After a while, you saw that strange gaze disappearing. There I saw that it really takes some time for people to process what it actually is’ (Interviewee 6).

It is important to remark that, not visibly or audibly displaying tics does not automatically mean that all is well, especially in situations where people expect adolescents to tic. ‘When I don’t display tics, onlookers think nothing happens’ (Interviewee 4), while it may cost a lot of energy to appear non-ticcing. Another adolescent shared how people commented on her ticcing behaviour when taking tic suppressing medication assuming there are no downsides such as side effects. ‘I really disliked when people said things were a lot better. Okay, I might show less tics. But they still hurt a lot (…) and I have less control over them. So, those comments, I didn’t like them’ (Interviewee 6). In summary, the visibility of tics and the gaze of onlookers play a key role in how Tourette's is experienced.

‘It Hurts a Great Deal’: Wishing Tics Away

In addition to the social dynamics of experiencing tics as described above, several adolescents discussed negative aspects and effects of tics that are not easily explained by an unwelcoming environment as per the social model of disability. For example, tics occurring at nighttime can interfere with falling asleep and motor tics in the orofacial area can cause mouth ulcers. Most frequently adolescents mentioned physical pain in the muscles and joints involved in recurrent tics. ‘The one tic with my neck is the most unpleasant’, exemplified one interviewee. ‘That one is highly painful, on top of it is usually accompanied by another tic. (…) I also have this tic where I start hitting myself in class. It hurts a great deal’ (Interviewee 6).

Moreover, certain tics interfere with activities considered important or valuable. ‘Well, sometimes it is a little annoying when I want to concentrate, for example, when studying. When I’m constantly tapping my fingers or doing something with my jaw, it can become a little distracting’ (Interviewee 5). Another adolescent who studies photography mentioned how tics hinder his practice. ‘When I have to take pictures, for example in the classroom, I’m sometimes not even capable of doing that just because my hands shake too much’ (Interviewee 1). One of the girls interviewed said the following: ‘I find my vocal tics often disturbing, for example when I’m in class or in a group or just with someone. Because I can’t have a normal conversation. Sometimes you must stop in the middle of a sentence because a tic is coming. That is annoying, especially when you’re having a serious talk with someone and such a stupid tic interferes’ (Interviewee 6).

Adolescents shared a variety of responses on how to relate to these negatively appraised aspects of tics. Across but also within individual interviews, adolescents shared some interestingly contrasting responses. On the one hand, inherently negative aspects of tics are downplayed. Displaying tics ‘is a part of me’, someone stated, ‘but it's not as important that it should define my whole day (…) I try not to let it have too much impact because I don’t want it, you know?’ (Interviewee 6). ‘It's just no fun to have it’, someone else reflected, ‘but then again, you should be happy you’re able to live. (…) If you have tics or something of the sort, it doesn’t matter that much (…) Not everyone is perfect’ (Interviewee 4). In line with these comments, several adolescents demanded a respectful public discourse on Tourette's framing it ‘not as a disease, but as something simply normal. We are normal people who can function well’ (Interviewee 2).

Yet, at the very same time, in five out of six interviews, adolescents expressed a hope to see their tics disappear, wane or stay away in the future. The following three quotes illustrate this hope.

‘Most of all, I’d like to see my tics stop. But they say the odds are low, that you really must hope for that 10 or 15%’ (Interviewee 4).

‘As long as they don’t disturb, it doesn’t bother me that much that I have tics, but I’d still like to get rid of most of them’ (Interviewee 3).

‘I hope they would disappear. And if they would stay, then so be it. That's something which belongs to me, whether it makes me stand out or not’ (Interviewee 5).

‘Not the Only Weird Kid’: the Difficulties of a Ticcing Community

A third theme, relevant for our research question, deals with the potential benefits and pitfalls of finding a ticcing community. Three of the adolescents mentioned they didn’t know anyone else who tics, except for people with Tourette's they’ve seen online, on television or came across at a single occasion. These three could not share much on the topic. The other three shared some notable experiences of meeting others with Tourette's. One of them, for example, changed schools and there used to be no one else with Tourette's in her class, but now she has two classmates who tic too.

‘I think this a good thing. It makes me more comfortable, because now I am not the only weird kid that makes weird noises at school. People, outsiders can try to learn what Tourette's means, but they’ll never fully understand it’ (Interviewee 4).

In this case, not being the only one who tics is clearly appreciated as it fosters a sense of shared understanding. This embodied way of understanding ticcing classmates can be mobilized to explain to onlookers what is going on and help deflect judgemental reactions.

‘I feel what those people are feeling. If they ask that person, “How come you do this and that?”, I can actually answer because I know what's going on. Or, let's say, I cannot explain, but I do feel, and do know what is happening. For example, if they make a movement and someone asks: ‘why are you doing that?’, I know what to answer in their place’ (Interviewee 4).

However, spending time with others who tic is certainly not always easy. Someone else talked about a new student in their class who also tics.

‘I did talk to her a bit at the beginning of the year, because she was new in our class. But I actually felt that she didn't want to hang out with me because of my tics… She adopted mine; the one with the head shaking. And I kind of adopted hers. She had a tic where she would bend forward and I now do that, combined with my own tics. I had the feeling that this made her want to hang out with me a little less or that she was afraid we would take over each other's tics. Although I basically got along with her’ (Interviewee 3).

Tics are suggestible, meaning that there is a tendency among Tourettic people to tic more or adopt new tics when seeing or hearing someone else tic (Jimenez-Shahed, 2021; Jones & Phoenix-Kane, 2025). In the context of finding peer support and community building, this suggestibility of tics creates a two-way problem which may prevent Tourettic people from spending time together in a comfortable way. People's tics may indeed increase in frequency or intensity, or new tics may be acquired. And even if this would not be the case, a second hindering factor might be a feeling of guilt that some experience as they see their Tourettic peer adopting tics.

‘I did find it unfortunate that a classmate of mine adopted my tics, she already had many more for which she frequently needed to leave the classroom. And then I make it even worse by adding another’ (Interviewee 3).

In this same vein of suggestibility, another interviewee explained how she used to date someone with Tourette's. This made her tic a lot more too, despite starting medication at that time. The spike in ticcing decreased again after they broke up. ‘That's what I find annoying when it comes to others with tic disorders. On one hand, we can all relate, we all have similar issues and would normally be able to discuss these things very well. But on the other hand, because of the impact of each other's tics, you can’t even have a proper conversation most of the time. When you try, you just get more and more tics, and you trigger each other. That is super annoying’ (Interviewee 6).

Importantly, the hindering dimension of tics’ suggestibility is not limited to in-person encounters. Our original interview guide was not designed to delve into online experiences, and we will address this issue more thoroughly below, nevertheless one participant shared that tics’ suggestibility also plays out digitally, for example when viewing videos by Tourettic content creators.

‘I've come across a lot of people talking about it (i.e., talking about Tourette's online) but I don't really follow it myself. Because often when those start talking about it, I start ticcing myself’ (Interviewee 4).

Discussion

The neurodiversity movement is regularly seen as a relatively new wing of the wider disability movement (Ne’eman & Pellicano, 2022). It is characterized by a focus on invisible or little visible, developmental disabilities such as autism and ADHD, which received less attention previously compared to physical, sensorial and intellectual disabilities. These conditions are reclaimed as minoritized neurotypes to be accepted and accommodated, rather than prevented, cured or normalized by biomedical or psychotherapeutic interventions. Community organizing among autistic people has been an initiating force for the movement and autistic-led collectives and autistic spaces are still playing a key role in advocacy, self-help and knowledge production (Kapp, 2020b). In this paper, we question to what extent experiences of Tourette's can find a place in this neurodiversity movement and benefit from neurodiversity theorizing. But also, if the movement wishes to do so, how can it actively make space for Tourettic people?

In this light, three themes emerged from our re-analysis of the interviews with Tourettic adolescents. First, experiencing Tourette's is characterized by the explicit visibility of tics and the gaze of onlookers. This theme invites us to reflect on the porous boundaries between neurodivergency and visible disability. Second, tics also have some negatively valued aspects that are not solely explained by ableist environments, such as physical pain. This theme challenges anti-cure positions in the neurodiversity movement. And third, the suggestibility of tics complicates Tourettic peer support. This last theme provokes questions on alternative, neurodivergent community building.

Making Space for Neurodivergency as Disability

The first theme that emerged corroborates earlier findings from qualitative work with people with Tourette's (Bervoets et al., 2023; Smith et al., 2015; Suh et al., 2022): tics cannot be appropriately understood as a phenomenon restricted to an individual's brain and body. This matches straightforwardly with the neurodiversity movement's focus on disabling and enabling environments. Not only autistic features but also tics are elicited and experienced in a social context. And these contexts are not value neutral. Some onlookers manage to react in neutral or helpful ways, while others tend to stare or make harmful comments. The role of onlookers in the experience of Tourette's forces people to take position and actively manage their tics in public. For most, navigating value-laden social contexts involves processes of suppressing or postponing tics in unwelcoming settings while sometimes allowing tics in trusted environments. This tic management approach obviously reminds of a key concept in neurodiversity research, that is, camouflaging or masking as described by autistic people, or processes of ‘passing as non-disabled’ discussed in disability studies (Cook et al., 2021; Samuels, 2015). Studying tic management in Tourette's in dialogue with camouflaging in autism might allow revealing parallels and differences. Are there equally negative mental health effects associated with camouflaging in Tourette's as is the case for autism? Are there significant gender disparities? Are there potentially meaningful ways to camouflage in a conscious and careful way?

The visibility of tics, however, also contrasts with some elements of autistic experiences discussed in neurodiversity scholarship. While some social situations require autistic people to mask atypical features, other situations require them to disclose their diagnostic label and publicly claim their autistic identity. Reasons to disclose an autism diagnosis are diverse, but generally revolve around the idea that autism is not self-evidently observed by (all) onlookers. Therefore, to obtain necessary accommodations, services or understanding, formally disclosing one's autism diagnosis is sometimes needed to navigate a social context which is not sufficiently accessible by design (Thompson-Hodgetts et al., 2020). As tics tend to catch the eye and ear, disclosing oneself as having Tourette's or being Tourettic, is seemingly a distinct experience as disclosing one is autistic. Especially if one is ticcing frequently in public, claiming to have Tourette's is maybe stating the obvious, putting to words what onlookers have already noticed. We find support for this hypothesis in Malli and Forrester-Jones’ recent book-length analysis of stigma and Tourette's (2025a). Here they quote one of their Tourettic participants saying:

‘You don’t have to actively engage with someone with Tourette's to find out they have Tourette's, so it's not like a secret they can unfold to you. Autism [sic] seems like they have much more ownership of it… If I was walking down the street now and I walked past someone with autism and someone with Tourette's, I’d know which one I would notice first. It's the person making the jerky movements. But you know, as an onlooker I’m quite passive but I’m still noticing it. You know, there's a chance that until I actually talk to someone with autism, I wouldn’t know they’re autistic’ (ibid, p. 186.)

A vignette study delving into Tourettic diagnostic disclosure, however, does suggest there are benefits to consider mentioning one is Tourettic even when tics can be clearly observed by the onlooker (Marcks et al., 2007). Diagnostic disclosure here is not so much about exposing one's hidden disability as is often the case for autism. Rather, disclosing one's diagnosis of Tourette's can help decrease social rejection by the onlooker and reduce misattribution of tics to other conditions such as alcohol or substance abuse (ibid).

So in contrast to ideas around diagnostic disclosure currently discussed in the autism-based neurodiversity movement, Tourettic experiences of hypervisibility might be closer to those of folks with visible, physical disabilities. For this latter group, staring and the disabling effects of onlookers’ gaze is already a well-described topic in the scholarly literature where Tourettic people can draw from (Garland-Thomson, 2006).

For us, the takeaway from this first theme, is not so much that the neurodiversity movement is and should only embrace little visible disabilities and that Tourette's does not tick this box. Rather, while certain conditions can be more easily perceived by onlookers than others, the case of Tourette's underscores that a hard binary between visible and invisible disabilities is untenable. Be it to different extents, arguably all disabled people have to deal with both instances of hypervisibility and invisibility, of claiming disability identity and passing as ‘normal’. In this sense, establishing clear boundaries for the neurodiversity movement based on whether a condition is visible or not, does not seem viable. In our view, making space for Tourette's in the neurodiversity movement is still possible, but it would require neurodiversity proponents to acknowledge neurodivergency as a porous concept which has much more in common with more visible disabilities than what has been acknowledged so far, rather than pursuing a view that sets neurodivergencies neatly apart from other disabilities (Ne’eman & Pellicano, 2022).

Making Space for Neurodivergency’s Undesirable Aspects

As a second theme, we discussed how tics can be painful, cause physical injury and disturb activities that are valued by the person with Tourette's themselves such as studying, sleeping or having uninterrupted conversations with friends. This finding, especially the occurrence of tic-related pain, corroborates previous work pointing out pain as one of the most frequent and impactful aspects of tics, for which professional help is often sought (Taylor et al., 2022).

Pain and other negatively appraised aspects of tics can, however, not be easily explained by unwelcoming environments and societal barriers as per the social model of disability which is dominantly referred to in the neurodiversity movement (Kapp, 2020b). One could argue that dynamics of internalized stigma or ableism might play a role here, and potentially this is the case to a certain extent. But even though all bodily experiences take shape in a social context, we believe it is untenable to categorize tic-related pain as a mere outcome of a neuronormative, disabling society. This is reminiscent of discussions previously held within disability studies. Among others, Kafer (2013) argues that the strict impairment/disability distinction of the social model overlooks the often-disabling effects of our bodies. ‘People with chronic illness, pain and fatigue have been among the most critical of this aspect of the social model, rightly noting that social and structural changes will do little to make one's joints stop aching or to alleviate back pain. Nor will changes in architecture and attitude heal diabetes or cancer or fatigue. Focusing exclusively on disabling barriers, as a strict social model seems to do, renders pain and fatigue irrelevant to the project of disability politics’ (p. 7).

Writing from a position of chronic illness, Wendell (2001) famously argued for solidarity between disabled people looking for a cure for certain impairments and those resisting all kinds of treatments. ‘Some unhealthy disabled people as well as some healthy people with disabilities experience physical or psychological burdens that no amount of social justice can eliminate. Therefore, some very much want to have their bodies cured, not as a substitute for curing ableism, but in addition to it. (…) Solidarity between people with chronic illnesses and people with other disabilities depends on acknowledging the existence of the suffering that justice cannot eliminate’ (pp. 17–33).

As we touched upon before, an anti-cure position is currently core to the neurodiversity movement, especially with regards to treating or preventing autism as such ³ (Bovell, 2020; Kapp, 2020b). For Tourette's, this position might not fit so easily as many of our interviewees discussed a hope to see their tics disappear over time. We hypothesize not only that the inherent negative effects of tics play a role here but also that Tourette's as such is for many not as identity-constituting as autism is. This remains up for further investigation though and the interview study on autistic and OCD features mentioned before provides an example here of such follow-up research (Long et al. 2024).

In any case, when theorizing Tourettic experiences, we believe there is much to learn from writings in the broader, critical disability literature. Here, inherently disadvantageous impairments are better acknowledged compared to the current neurodiversity discourse which still focuses primarily on celebrating difference and pointing to societal obstacles as sources of experienced problems. In addition to debates and authors mentioned above, the work of disability philosopher Barnes (2016) might be useful to consider as well. In The Minority Body, Barnes discusses the relationship between embodying a physically disabled body and well-being. In her ‘value-neutral model’, she argues that, globally, disability is neutral with respect to well-being and that this relationship depends on the conditions disability is combined with. Interestingly, her theory of disability creates space for so called ‘local bads’: disability-related aspects that do cause harm to someone's well-being, be it in specific (local) domains of life. Some tics, for example the most painful ones, can be theorized as such ‘local bads’ for which professional help is welcome. Acknowledging such local bads stays clear however from conceiving of Tourette's as a pathology altogether and from striving for normalization of all Tourettic behaviour through therapy. Empirical findings are supportive of this position. In a survey among 181 adults with Tourette's, only a third indicated that tic-suppressing medication actually improved their pain. Only a fifth said so for behavioural therapy. Reducing the shear amount of tics does not seem to reduce pain effectively (Taylor et al., 2022). Therefore, we believe it is entirely coherent to look for a ‘cure’ for undesirable aspects of Tourette's, without pathologizing Tourette's in general and without losing a critical eye on social determinants of well-being.

The takeaway from this second theme for us is that making space for this delicate move away from a strong anti-cure position is probably a required step to make space for Tourettic people in the neurodiversity movement.

Additionally, a critical but open take on treatments and therapies targeting core neurodivergent characteristics (and not only secondary mental health problems such as depression and anxiety) might not only benefit the inclusion of Tourettic people but also autistic, dyslexic, ADHD people and others who would like to explore whether clinical care could be helpful for them for specific neurodivergent features. Put differently, if the neurodiversity movement would make space for Tourette, it would also make space for a critical openness to a host of therapeutic interventions across various neurotypes. Neurodiversity-affirmative clinical care can then be conceptualized (in part) as helping neurodivergent people deal with what they consider themselves local bads- and this without compromising disability pride nor structural, anti-ableist efforts (Pantazakos & Vanaken, 2023; Vanaken, 2022).

Making Space for Alternative Neurodivergent Community Building

The third theme that emerged from our re-analysis was that of community building among people with Tourette's. Looking at the current neurodiversity movement, there is no doubt that autistic community building was and still is a key aspect. By creating autistic-led on- and offline spaces, experiences could be shared in a safer and more accessible way. In addition to recognition and joy, these niches have also shown to give rise to novel ideas and concepts (Bertilsdotter Rosqvist et al., 2019). This is not to say that all autistic people naturally get along well but, as theorized in Milton's double empathy problem, the greater overlap in experiences and expectations seem helpful in establishing rapport between autistic people as compared to cross-neurotype interactions (Milton et al., 2022). Our interviewees also discussed that the presence of other students with tics at their schools, for example, offered a sense of recognition and solidarity. At the very same time most of them shared they did not seek each other's company actively as they were reluctant to trigger tics or be triggered themselves. In contrast to autistic community building, the suggestibility of tics seems an obstacle for people with Tourette's to come together and organize themselves similarly.

Despite this obstacle, there are Tourettic support groups in several countries which do come together in-person to discuss their experiences and help each other live their lives in the presence of tics (e.g., Iktic-Jetique, n.d.; Tourettes Action UK, n.d.). As far as we know, there is no scholarly literature available on such in-person Tourettic community interactions. How do organisers and participants deal with the issue of tic suggestibility? Are there any strategies to buffer its impact? Future ethnographic research by and with Tourettic people can shed valuable light on such questions.

For online Tourettic interactions, some more academic work is already available. Jones and Phoenix-Kane (2025), two Tourettic Tourette's researchers, described how tics’ suggestibility plays out in their research with people with Tourette's. Conducting and reviewing video-interviews, for example, is triggering for both researcher and participant. The online context however also offers partial workarounds: both parties can choose to mute audio or turn off video at moments of intense tic expression to shield their interlocutor.

Other researchers conducted a qualitative analysis of postings in a British online support group for people with Tourette's. They concluded that such communities indeed function as space ‘where [Tourettic people] could share and ask for information about tics, unload and share their feelings arising from living with Tourette syndrome, find people facing similar situations and experiences, and freely share the realities of living with Tourette syndrome’ (Soós et al., 2022, p. 5). In a survey of participants of this same online support group, the aforementioned benefits of finding a community of Tourettic people have been documented as well. Yet, the issue of picking up tics from others surfaced too. Two coping strategies were mentioned by community members, one personal and one more collective: avoiding reading posts in the group on the so-called ‘bad tic day’ and using trigger warnings at the beginning of posts that describe or visually depict tics. So the barrier of suggestibility was there, but it didn't seem insurmountable in this particular setting (Perkins et al., 2020).

The takeaway for this third theme for us is that community building among people with Tourette's has similar promise to that of autistic people who have done so under the banner of the neurodiversity movement. However, the lived experience of people with Tourette's shows that meeting others who may trigger more tics or take over one's tics is a potential obstacle. If the neurodiversity movement wants to make space for Tourette's, the autism-inspired notion that embodying the same neurotype facilitates communication, understanding and community building should be nuanced. But conversely, inspired by the success of autistic community building, more research on Tourette's peer interactions and support is a research topic that deserves significantly more attention.

Conclusion

Tourette's is traditionally considered a neurodevelopmental disorder mainly discussed in neurobiological, psychiatric and psychotherapeutic terms. Increasingly, people describe Tourette's alongside autism and ADHD in lists of conditions that fit under the neurodiversity umbrella. In this study, we explored to what extent Tourette's cannot just be included discursively, but also actually find a place in the political neurodiversity movement? And, if the movement wishes to include Tourettic people, how can it actively make space for them?

We have seen that theorizing Tourettic experiences may indeed benefit from concepts prevalent in neurodiversity studies, such as camouflaging, a non-individual, socially embedded take on disability and the value of finding connection with other people who tic. At the same time, certain experiences conflicted with commonly held ideas in the current neurodiversity movement. First, as tics are generally visible or audible, Tourette's does not qualify as a so-called hidden disability which often serves as a descriptor of the neurodiversity movement. In this regards, there is potentially more affinity with more visible, physical disabilities. Second, certain consequences of tics are considered inherently negative, irrespective of the social context and several adolescents wished their tics away. This contrasts with the more celebratory take on autistic identity and relatively strong anti-cure positions that are common in the neurodiversity movement. Lastly, the suggestibility of tics complicates Tourettic community building, and it still requires more efforts to create supportive Tourettic spaces.

In summary, thinking through the possible inclusion has made clear that theoretical and political tools developed in the existing neurodiversity movement can bring benefits for Tourettic peoples as well. Yet, we have also seen that there are certain key assumptions within the current neurodiversity movement that pose an obstacle for expanding its constituency. This will require careful internal discussion among neurodiversity proponents. Our analysis highlighted that the lived experience of Tourette's has both aspects in common with a neurodivergence as autism on the one hand, and with more visible, physical disabilities and with chronic illnesses on the other hand. Our hope is that taking such testimonies seriously will help build a stronger neurodiversity movement attentive to its internal diversity of lived experience and political demands.