Background to Tourette’s and Tourettes Action
Ione stated that Tourettes is a misunderstood and stigmatized condition. She began by giving a background to Tourette’s, she said that tics and Tourette’s are not rare, it impacts 300,000 people in the UK alone and 1 in 100 school aged children. It is a neurodevelopmental condition, meaning that it typically starts in childhood but that is not the case for everyone, and it causes involuntary sounds and movements. Tics range from being simple to extremely complex, they can be sentences, words and noises which can look different on everyone. The swearing feature of tics and Tourette’s is called Coprolalia, and this only impacts a minority of 15 – 20% of the Tourette’s community. This minority of individuals face the biggest challenges accessing employment, leisure, rest and well-being. Ione spoke about Lewis Capaldi’s touching performance and revelation of his Tourette’s condition at Glastonbury, which spiked interest in Tourettes Action’s work.
Trish highlighted that Aberystwyth University Students’ Union trained their team to look at neurodiversity pre-COVID, which generally was ahead of the curve in comparison to other organisations. She said Tourette’s was not included in this training which was surprising when considering the prevalence of Tourette’s versus Autism. Around 1.1% of the population have been diagnosed with Autism and, around 1% have been diagnosed with Tourette’s. Trish said she got an ADHD diagnosis aged 40, which opened her eyes. One of the students that was elected to work with the Union, as the Disabled Student’s Officer, had quite complex vocal tics and he was anxious about starting work with the union. It became clear to Trish that this student needed to slot right in and not be worried about what people might think of him and the best way for this to happen was to train their current staff – this was when Trish came across Tourettes Action. Tourettes Action upskilled the organisation allowing them to increase their knowledge and change their practices accordingly.
Luke’s Story
Luke explained he fits into the smaller percentage of people with the ‘non-socially accepted’ version of Tourette’s. Luke’s symptoms didn’t start until his mid-20s, after he suffered damage to his brain. He said that he didn’t know adults could get Tourette’s until it happened to him and because of the new condition he lost his job, he was a national Head of Marketing at a large corporate dental practice and they asked him to leave because he failed a government regulator assessment based on clear communication and he was then deemed to be unsafe to be able to manage in that role. He had worked really hard to get to that position, and then not only did he have a new onset of tics but he had no career, no way to pay his mortgage and no options. He had a string of interviews for roles he was overqualified for but as soon as they met him it was an instant ‘no’ – even from companies that were at the time preaching equality and diversity. Luke then applied to a role he had always wanted to work for, he did 4 online aptitude tests and due to his scores on the aptitude test he bypassed the first round of interviews and got to the second round where we was against 3 others. He was told the interview was going to be an hour and a half and it took an hour to get there. Immediately on arrival the receptionist was rude to him and asked him point blank what was wrong with him. She then walked him into the interview room which had a panel of 4 people and explained his condition to them, they then all spoke to each other in front of him and told him he wouldn’t be suitable for the role.
Following this awful experience Luke then found Tourettes Action and this enabled him to finally speak to people with the same condition as him, which gave him so much more information and self-acceptance. It gave him this boost of, if no one is going to employ him, he would just employ himself. So, he used the skills he had and started his own company. A neurologist advised him against doing this, as it was too stressful, and to just claim the benefits which were 930 pounds per month. This inspired him to think if he earnt more than the benefits then he was wining. So, he began as a virtual assistant which initially was fairly quiet. After sharing a LinkedIn post about his condition and highlighting that a person can still have a career, the business took off and now they are fully booked and have 2 offices with a team of 9.
What Tourettes Action Do
Ione highlighted if employers and organisations are unwilling to make reasonable adjustments that relate to understanding, compassion and acceptance then they actually do not deserve to harness the incredible skills and talents of people with Tourette’s. She also mentioned it is pioneers such as Luke that are showing young people with this condition that they will have a future, and a bright future at that.
Luke said one of the best things that Tourettes Action did for him was ran group sessions for people with Tourette’s. The moderator in those sessions, guided the conversations and allowed Luke to realise he was not on his own and had many similarities to those with the condition, which took away that isolation.
Ione made an important point that it is not the responsibility of the employee to self-advocate or educate. It is important that the employers feel confident and explore reasonable adjustments and put those in place. For example, making interviews hybrid, or with short with breaks, as interviews are nightmares for any of us on the best day let alone when you are living with a condition that’s so stigmatized that your symptoms increase when you are excited or anxious, making interviews an even bigger hurdle. Ione said that Tourettes Action focus on understanding what is going to help the applicant, another one being providing interview questions to applicants beforehand, avoiding massive pretests that don’t necessarily have that much of an impact on the job role or don’t tell you that much about someone’s ability to do the role. They also help beyond securing that role by helping employers recognise what they can do to make sure the employee thrives in that role.
At Tourettes Action they say reasonable adjustments for tics and Tourette’s fall into three main categories: adapting the task or process, adapting the physical environment and adapting the social environment. She highlighted that tics and Tourette’s are associated with a rebound effect, with the idea that some people are able to suppress or hold in tics but this means at the end of their working day they go home and all of those suppressed tics leak out, meaning people haven’t got the energy to play with their kids or go to an exercise class, they might not be able to sleep because they’ve got this rebound of tics and anxiety and it’s completely unethical. So Tourettes Action is encouraging workplaces to allow their employees to be themselves and to feel that their team truly understand the nature of this condition.
Trish went on to say that organisations in the recruitment stage that say they want anyone to thrive need to be challenged if this inclusivity is only to a level and whether there’s a stigma around what level you can get to with certain diverse conditions. She said employers need to challenge themselves to think even if they are accepting, does this have a limit. She admitted that this may not easy for organisations to do, however it is easier for them to say they are inclusive. Trish then explored if it was acceptable if a chief exec has very severe dyslexia. As an employer you may be inclusive in this way by providing the software to help them check their spelling and organise a sentence. Alternatively, she suggested if that software was necessary and can people just accept some misspelt words if they understand what the email was trying to say. Trish also went on to say that Luke is a brilliant example of a role model outside the creative industries, for those people who want to go into business or start their own company.
How Luke approaches inclusion in his organisation
Luke then described his workplace and said that businesses need only to take a small financial hit to make the biggest difference. In Luke’s team there are people with ADHD, autism, dyslexia, dyspraxia, Walsh, OCD and Tourette’s so naturally he has a diverse team. In their offices they have a chill out space, TV, sofas which anyone can use when they need to. All the employees have flexible schedules, despite this they all work in the office most of the time because they like being together. They can take breaks when they want and can just text him if they can’t make it to work. If they have meetings Luke outlines in advance what will be brought up and they have shared documents if anyone wants to add anything to reduce that anxiety around the unknown. Luke said that he will always back his employees, he would rather replace a client than an employee. Luke has two mangers in his team and they have both been trained to work exactly the way he does. It does seem relaxed but everyone gets their stuff done.
Luke has made rules around comfort and being accepting which is a world away from the outdated 1980s corporate world of determining how someone was to dress and the time they turn up. Their policies and contracts are easy to read, and they have an audio version of each one to be inclusive. He said he wants his employees to work their best and stay because he doesn’t want to lose out on great talent like other companies have.
The workplace at Students’ Union in Aberystwyth
Trish went on to talk about the workplace at the Students’ Union in Aberystwyth. They have a diverse team, she thought other employers should be questioning their own demographics and ensuring neurodiversity is part of their thinking. By understanding the broad picture then the correct action can be taken. She said the simplest way of making this happen is ‘by being human’ and accept the people that work for you are humans too.
She highlighted the importance of allowing employees to feel comfortable to say ‘my neurodiversity may get in the way of a task’ – it’s not a question of going on a course to fix their brain So, for example don’t put someone with ADHD on a time management course as it will serve little purpose.
Trish explained if something at home is difficult then that is likely to spill into work therefore it is worth investing in employee assistance programs that allow people to get support for non-work things. At the Students’ Union in Aberystwyth they have been giving interview questions in advance for the last 4 years because it enables people to give their best answer and represent themselves in the best way they can.
Future for Tourettes Action
Luke said that his company is now a corporate sponsor of Tourettes Action and they donate to them every month and they will be doing a fundraiser in the summer for the charity.
Ione mentioned Tourettes Action will continue to work with targeted individuals to help individuals thrive and stay in work and education. They also aim to make an impact on a national level. There are no NICE guidelines of clinical assessment prescription guidelines for Tourette’s Syndrome which their Chief Executive, Emma McNally, is trying to make happen.
