Film Development Research Project: Process and Findings

Posted on 30 September 2025 by Pippa McClounan

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A summary of a recent research study supported by TA

Introduction

In 2025, researcher and filmmaker Alanna Willis conducted a research project supported by Tourettes Action and the University of Bristol. The research explored participants’ lived experiences of Tourette syndrome (TS), the representation of TS in the media, and how to foster accurate and authentic portrayals.

Research Aims

The research aimed to consult people with TS to help inform the development of a feature film that would have maximum social impact. As TS is underrepresented in the media and often misunderstood, the researcher hopes to do justice to not only her own story, but also to the wider TS community. In this context, social impact can be measured through the following criteria:

Public education
• Educating the public about TS
• Correcting misconceptions and fighting stereotypes
• Depicting the diverse manifestations of TS
• Depicting the challenges of living with TS
• Promoting more tolerant attitudes towards TS

Empowerment of participants
• Giving a platform to the TS community to tell their own stories
• Being the first feature film written, directed, acted in and pioneered by multiple people with TS

Empowerment of viewers
• Empowering the TS community through authentic and accurate portrayals
• Promoting of the message that people with TS and other disabilities can achieve success
• Providing onscreen and offscreen representation

Research Actions
The researcher undertook the following actions:
• Completing an Ethics Application
• Connecting with a range of participants regardless of age, gender or location. This was achieved thanks to Tourettes Action’s vast connections with the TS community
• Holding in-person and online one-on-one consultations with participants
• Writing up findings
• Drawing on findings to develop a screenplay
• Updating participants with progress

Code of Practice
• Iterative Consent: This was practiced through the use of consent forms and active discussions of consent. Further consent forms will be provided if the participants are to continue engaging with the film further down the line
• Anonymity: Questions of anonymity were actively discussed, such as the potential widereaching scope of the film, how each participant wishes to be credited and the use of pseudonyms
• Comfort: The participants were asked where and when they would like to meet. They were offered rest breaks and reminded that they could refuse participation at any point
• Redress: Participants were given ‘Source of Redress’ forms to encourage them to share any complaints or grievances surrounding the research process
• Engagement: Participants will continue to be updated with the project’s progress. The researcher wishes to invite participants to any future screenings or events associated with the film

Findings

Lived experiences of TS

Participants reported a huge range of lived experiences, reflecting how each person’s manifestation of the condition is as unique as a ‘fingerprint’. Specific vocal tics ranged from words and phrases, such as saying ‘It’s raining’ (before throwing an object), echolalia, which is the repetition of words or phrases said by others, and sounds including whistling, bird noises, huffing, grunting and sniffing, to name but a few. Specific motor tics included self-injurious tics such as hitting oneself and chewing one’s tongue, alongside grimacing, neck and shoulder movements, stomach tensing, excessive blinking and more.

Participants frequently responded that their journey to gaining a diagnosis was delayed, complex and sometimes preceded by misdiagnoses. This was particularly the case for individuals whose symptoms were atypical or mild at onset. Some reported that parents and teachers mistook their tics for habits, intentional behaviours or quirks, with one respondent being seen as a ‘naughty child’, ‘class clown’ and ‘idiot’.

The reactions of others to participants’ TS varied widely, ranging from support and empathetic humour, to misunderstandings and cruelty. The religious parents of one participant believed she was possessed by the devil and arranged an exorcism for her, with another participant’s father telling him to ‘shut up’ and count to five when ticcing. On the other hand, some participants’ family members actively educated themselves about the condition with one family laughing kindly with the participant over her swearing tics. Many participants reported valuing humour as a way to cope with their TS and connect with others. Some participants reported having highly understanding partners, although one participant’s own insecurities caused the worry that her partner might feel ‘duped’ because her tics were milder when they first got together.

Participants reported both support and bullying from school teachers, with one participant’s teacher making her stand in front of the class whilst ticcing so to humiliate her and another teacher accusing her of seeking attention. Members of the public are reported to respond to TS with confusion and staring, with two participants being questioned if they were on drugs. One participant discussed ‘the Tragedy Mindset’ of people reacting with shock and distress when disclosing her child’s TS diagnosis, as if it were a tragedy.

Meeting other people with TS was reported as a source of both validation and overload, as being around many overlapping tics can be noisy and overstimulating. However, some formed lifelong friendships with others who they met through TS support groups, while one participant recalled how her neighbour, who had a son with TS, recognised her condition before she did herself.

Participants reported experiencing tic attacks, which are episodes of intense and sometimes dangerous ticcing, which tend to be triggered by stress, anxiety, and sensory input such as bright lights, noise and being hot or overstimulated.

Many participants reported that concentration on art or performance significantly reduced their tics. One participant reported ticcing during acappella rehearsals but not her actual performance. Other participants reported entering a sort of ‘performance mode’ when singing, dancing and teaching, reducing tic severity.

The participants worked in a range of careers, from social care, teaching, hospitality, public speaking and advocacy. One participant was a hip-hop artist and death metal singer. However, participants’ TS has also discouraged certain paths. One participant wanted to pursue gymnastics but was advised against it by a pediatrician due to her TS, while another participant originally wanted to work in a library but realised it would be difficult due to the required
quietness.

The representation of TS in the media

The majority of participants expressed frustration with the stereotype that TS is primarily about swearing (coprolalia). This stereotype is perpetuated by media portrayals which often focus on the most ‘extreme’ and ‘entertaining’ aspects of the condition. One participant noted that the stigma of coprolalia is so severe that some individuals with TS feel pressured to constantly correct misconceptions by explaining that coprolalia only affects 10% of people who have TS. Furthermore, due to the stereotype’s pervasiveness, individuals that do not have coprolalia often face disbelief or accusations of faking their condition because they do not fit the stereotype. Participants also criticised the false claim spread by Scarlett Moffatt’s 2022 BBC Documentary Britain's Tourette's Mystery that TS was ‘catching’ and could be contagious, which led to public panic and discrimination.

On the other hand, many participants brought up celebrities Billie Eilish and Lewis Capaldi, who have TS, as empowering role models who show that it is possible to succeed without being defined by the condition. One participant praised Eilish’s openness about her condition, despite the fact that her tics are not always apparent, and noted that Capaldi showcased the variability of symptoms over time as his tics fluctuated alongside his fame. Capaldi revealed his condition to the public after people began noticing his tics and assuming that he was unwell or on drugs.

Towards accurate and authentic portrayals

One participant noted that film and TV projects about TS often commence with pre-existing agendas that override the authentic experiences of those that actually have the condition, leading to a scarcity of accurate portrayals. She noted that people with TS should be in key decisionmaking roles and present in the editing room. Others mentioned the importance of establishing a safe space where people can express themselves without judgement.

Participants called for narratives that challenge the ‘Tragedy Mindset’, reminding audiences that people with TS can live ordinary and often successful lives. They don’t want the condition to be seen as a source of pity or as a character’s sole defining quality. They expressed that the public should recognise that people with TS can possess discipline, artistic qualities, intelligence, and are able to succeed in fields not typically associated with the condition, such as acting, music or presenting. However, one participant pointed out the importance of avoiding ‘Inspiration Porn’, which risks reducing those with TS to objects of pity or motivation rather than portraying them as whole and complex individuals.

Participants agreed upon the importance of representation for reducing stigma around the condition and providing characters that the community can relate to. They emphasised the need to educate audiences on the complexity of TS and the full scope of challenges it brings beyond tics, including exhaustion, emotional strain and societal judgment. One participant pointed out that films could be a form of accessible education about TS in light of the scarcity of affordable or popular science books on the condition.

Conclusion

The findings show the wide diversity of lived experience in individuals with TS and how the condition can shape interactions, career paths, and relationships. Participants point to the need for authentic and nuanced portrayals of the condition which challenge the stereotype that TS is primarily about swearing and the false claim that TS can be contagious. They hope that future film portrayals of the condition will move beyond pity or sensationalism and instead reflect the complexity of living with TS.

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