May marks the beginning of Tourette Syndrome Awareness Month. It aims to destigmatise Tourette Syndrome (or Tourette’s) and increase public understanding of this often-misunderstood condition.

As part of our ongoing Understanding, Valuing and Celebrating Neurodiversity Project, we’re focussing on how research institutions can better support and harness the unique strengths of colleagues with Tourette Syndrome.

Moving beyond misconceptions

Tourette Syndrome (TS) is an inherited neurological condition that causes involuntary and uncontrollable motor and vocal tics. Despite affecting more than 300,000 people in the UK, it remains widely misunderstood and often stigmatised.

The most persistent misconception is that TS is simply ‘the swearing condition.’ In reality, coprolalia (involuntary swearing or utterance of obscene words) only affects about 10% of people with TS. The vast majority experience different types of tics that can occur in nearly any part of the body.

Tics typically begin in childhood, around ages six or seven, and may fluctuate in severity and frequency throughout life. For many individuals, these tics can be physically painful and sometimes disabling. According to a survey from the Tourette Association of America, around 87% of adults with TS reported that their tics cause them pain. After a long day of work, tics may become more pronounced due to fatigue or the effort spent suppressing them in professional settings.

The reality of stigma and discrimination

The stigma surrounding Tourette Syndrome has profound real-world consequences. A study published in the Journal of Developmental and Physical Disabilities in 2021 found that participants with TS faced discrimination in numerous aspects of life: 75% in education, 71% in their social lives, 61% on public transport, and 54% in employment contexts.

Unemployment rates for people with TS are two to three times higher than for the general UK population. Even more disturbing is the finding in a 2017 study that people with TS are around four times more likely than the general population to take their own lives – a stark indicator of the psychological toll of persistent stigma and misunderstanding.

Our tendency to pathologise and reject difference has significant impact. When we observe someone whose movements or vocalisations differ from our own, and we respond by assuming different behaviours and sounds are out of place, this not only causes distress to the individual but reinforces harmful stigma that has no place in our diverse research community.

As scientists, we know that human variation is natural and valuable. Just as we study and celebrate biodiversity in our research, we should embrace Neurodiversity in ourselves and in our colleagues.

Unique strengths for scientific innovation

In the complex world of research, we need minds that have:

• Enhanced pattern recognition: Many individuals with TS demonstrate the ability to identify subtle patterns in complex datasets; this is a crucial skill in genomics, plant pathology, and systems biology research.
• Verbal communication strengths: Research suggests that individuals with TS may have particular strengths in processing language and assembling sounds, which can translate to strong science communication abilities and clarity when explaining complex concepts.
• Exceptional focus: The same mechanisms that help individuals manage tics can enhance cognitive control, allowing for sustained concentration on detailed research work, essential for maintaining experimental rigour in long-term studies.
• Methodical problem-solving: Many researchers with TS excel at developing systematic approaches to complex problems, which is invaluable in designing robust research protocols.
• Creativity and energy: Many people with TS demonstrate high levels of creativity and energy, qualities that drive innovation in scientific thinking and approach. As one 2018 study noted, individuals with TS often succeed in attaining significant social milestones and report high subjective quality of life.

Creating a Tourette-affirming research environment

For research institutions looking to create more inclusive environments for colleagues with Tourette Syndrome, consider these practical approaches:

1. Normalise Neurodiversity in scientific spaces

Make it clear that Neurodiversity, including Tourette Syndrome, is an expected and valued part of your research environment. Challenge the notion that “professional” means “Neurotypical.” Set the expectation that colleagues will differ in how they move, communicate, and process information, and that these differences strengthen your collective research capability.

2. Adapt physical workspaces

Research environments can present unique challenges for those with TS. Consider offering:

• Options for quiet workspaces when needed, particularly for those with vocal tics
• The ability to work remotely on high-tic days
• Sensory regulation tools in meeting rooms and communal areas
• Consideration of lighting and sound in shared spaces.

3. Avoid inadvertent discrimination

Ensure that existing procedures and organisational culture don’t inadvertently discriminate against Neurodivergent behaviours. For example, ensure all staff including colleagues such as reception, catering and security personnel, have access to training to recognise that diverse movements and vocalisations can often be expressions of Neurodivergence, not always a cause for concern or intervention.

4. Support open scientific collaboration

Foster an environment where colleagues feel comfortable disclosing their TS if they choose, without fear of judgment or changed expectations about their research capabilities. Ensure that collaborative projects are structured to accommodate different working styles and communication preferences.

5. Implement clear research communication practices

In research discussions and team meetings, provide:

• Written agendas shared in advance
• Multiple options for participation (in-person, virtual, with or without camera)
• Clear, explicit instructions rather than implied expectations
• Written follow-ups after verbal discussions.

6. Understand tic fluctuations

Recognise that tics fluctuate with stress, excitement, and fatigue. As noted in research literature, high-stress situations such as presentations or important meetings may make it harder to suppress tics, and the energy used in suppression may affect concentration. Offer flexibility in how colleagues participate in these activities.

For more in-depth guidance on supporting researchers with Tourette Syndrome, listen to this podcast episode which specifically addresses Neuroinclusion for individuals with tics and Tourette Syndrome. Tourette’s Action also provides useful guidance specifically for employers on their website.

Embracing neurodiversity in scientific innovation

As a plant and microbial science research institution committed to “Unlocking Nature’s Diversity” (as proudly displayed outside our Bateson building in Norwich), we understand that diversity, whether in plant genetics or human cognition, creates resilience, innovation, and adaptability.

This Tourette Awareness Month, let’s commit to treating difference as an expected and valuable part of our research community, not as something to be reported, ‘fixed’, or hidden away. Difference is an essential component of scientific innovation.

By creating an environment where colleagues with Tourette Syndrome can bring their authentic selves to work without fear of misunderstanding or judgment, we enhance not only individual wellbeing but our collective ability to solve the complex challenges of plant and microbial science.

This blog is part of our Understanding, Valuing and Celebrating Neurodiversity Project. If you would like to learn more about our Neurodiversity initiatives or share your own experiences, please contact Leah Milner-Campbell (leah.milner-campbell@jic.ac.uk), our Neurodiversity Project Officer.