One in a five-part series on the benefits of recognising and supporting neurodistinct talent in your organisation, this is the story of Justin, a cyber software engineer, one of more than 300,000 people in the UK living with Tourette Syndrome (TS).
Tourettes Action defines TS as “an inherited, neurological condition, the key features of which are tics, involuntary and uncontrollable sounds and movements. TS is a complex condition and can include traits associated with other conditions under the umbrella of neurodiversity, including difficulty processing information at speed, and hypersensitivity to light, sound, touch, taste, or specific sensory stimuli.
Keen to succeed, despite the odds
Unlike Yasmin, Glenys and Nicky, Justin found it too painful to relate his experience first-hand. He had a tough time at school, particularly as a teenager: he was often exhausted due to the effort required to suppress his tics, and he was bullied. Some of his teachers wrongly assumed that he had a learning disability and expected little of him. Others concluded that such a well-behaved boy who excelled in some areas was just anxious and needed to ‘grow up’.
University had its ups and downs too, despite disclosing his condition and seeking support early on. But Justin graduated nonetheless and landed a job in a tech start-up company. Encouraged by the company’s declaration that “Our people are the most valuable asset and we value the views and opinions of all our employees regardless of race, colour, ethnicity, gender, disability, or age,” Justin was excited to join the team. Once through his probation period, he soon began to feel he could make a difference and was congratulated for spotting a potentially damaging anomaly in a high value assignment.
Unchallenged ignorance
Regrettably, the honeymoon period was short-lived. The business lost a large piece of work and Justin was redeployed to a project for which he was not trained. His new manager‘s attitude was that Justin was “not in work to continue his education” and that he needed to catch up and “pull his weight”. Keen to demonstrate his ability to problem solve, Justin’s response was to asks lots of questions and seek certainty, only to be met with derision and a barrage of quick-fire verbal responses which grew louder and more intimidating in direct proportion to how confused Justin seemed.
The ensuing stress triggered a worsening of Justin’s tics. He could feel himself getting angry and tried to explain how, especially when stressed, he would find it difficult to remember verbal instructions and it would be better if he could refer back to what was required in written form. This request was not received well, and Justin started to notice that conversations would stop when he walked into the room, and at one point he heard his manager and a teammate making jokes about his leg tic and speculating as to when he would start swearing.
Justin’s anxiety levels soared. Sleep had never been easy for him but now it was much worse and on a couple of occasions he overslept and was late for work. Plucking up the courage to speak to the Finance Manager (responsible for Human Resources), he was met with, “I have health issues too, but it doesn’t mean I bring them to work.”
The ultimate price
By now Justin was making what he himself described as ‘basic’ mistakes. Isolated and unhappy, he handed in his notice. Feeling powerless to challenge what was happening, he left because he “couldn’t take it anymore.” His mental health spiralled, he stopped seeing his friends and a few weeks later had a breakdown.
It has been a long slow road to recovery. He has shown amazing resilience and has taught himself filmography to an advanced level, but he is still not able to work. Indeed, he may never use his knowledge of cyber security again, as, in his own words, “I’ll never work in an office again.” What a tragedy. What a waste of talent.
If only …
The employer projected an image of a friendly workplace where ‘having fun’ was important. We can’t know what their response would have been if challenged, but “it was just banter” or “we didn’t realise he was so unhappy – he never said” would perhaps not be surprising.
It could have been so different. With the right support, and in the right environment, those affected by TS can achieve their goals. Natalie Davidson and Roy Roos, are both inspiring examples of what can happen when people feel able to be themselves.
What could Justin’s employer have done differently?
When you understand more about neurodiversity, it is easier to spot hidden talent.
Employers can’t be expected to have all the answers at the flick of a switch. But the information can easily be found: neurodiversity refers to the range of differences in individual brain function and behavioural traits, and neurodiverse conditions include, amongst others, Autism, Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, Dyspraxia and Tourette Syndrome. There is a huge amount of overlap between each of these conditions and no two people with the same condition are completely alike.
It is true to say that the media can skew perceptions by portraying TS as all about emotional outbursts and uncontrollable swearing. But a little research would have revealed that TS is not an emotional disorder and that only a small proportion with the condition vocalise socially unacceptable words or phrases. Also that tics wax and wane and change over time, are uncontrollable, and that some can temporarily suppress their tics but doing so is exhausting. Time taken to find out what was going on for Justin would have warned them that pointing out someone’s tics to them is demeaning and can lead to increased ticcing.
Lastly, and perhaps most importantly, the employer would have realised that Justin was likely to have an ability profile which is ‘spiky’ (big differences between strengths and weaknesses) and probably excels in skills like verbal communication, creativity and empathy. Time and energy focused on what someone can do will always generate a greater return on investment than ‘fixing’ what they find really hard..
Listen and work with the employee
People with neurodiverse conditions are usually aware of what works for them: it is always better to involve them in anything you are planning to help mitigate the impact of their TS. Reasonable adjustments will always be tailored to an individual’s situation, but could include arranging to have “tic breaks”, identifying and removing triggers, flexible and home working, providing templates and carrying a card or letter that explains that they have TS and why they might be making unusual noises or movements.
Nurture a culture of psychological safety
No one thrives in a hostile atmosphere, but TS is often accompanied by anxiety and invariably made worse by stress. Neuroscience now provides clear evidence that feeling continually tense and under the spotlight will reduce our capacity to think clearly, concentrate and work at our best, irrespective of how our particular brains are wired.
In situations like Justin’s, managers will often say that that ‘they can’t understand the problem because my door is always open’ and fail to grasp how fear of further ridicule or retaliation prevents people from speaking up. No doubt Justin’s work did suffer, but it needn’t have.
Clare McNamara
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