At several key moments in my life, Occupational Therapists (OTs) have suggested tools or approaches that have transformed what I’ve considered possible. Occupational Therapy has a lot to offer those of us with tics and Tourettes, but this is often underappreciated and underutilised, so I sat down with Ione Georgakis, an Occupational Therapist with Tourettes, to talk all things OT.
Jess: What is OT?
Ione: It’s supporting people to do the things they want and need in order to live a meaningful life in our current society. That falls into lots of areas, from productivity to rest, pleasure, leisure or play. I think it’s really important to give voice to this variety because there’s this idea that what OTs provide is equipment to let you mobilise or shower independently, which is amazing and true. But the spirit, the soul, the heart of OT is all about what is life to you? How can we help you to achieve that and overcome any of the challenges you’re facing at that time, those challenges include the physical, social and sensory environment that we all exist in.
Jess: That’s such a beautiful way of describing it. I think because it’s got ‘occupation’ in the title, sometimes people just associate it with work. Good OT practice, though, is really important in every aspect of our lives and can make a huge difference.
Ione: What makes me sad is that I think that what OT is at its core and what it is in practice, in our current health and social care climate, is so different. There’s a really big gap between what you want to be able to do to support people versus what you can do, and I think this does the profession and out clients a disservice and perpetuates misunderstandings around what we do.
Jess: It must be an incredibly interesting and complex experience, training as an OT, and then practicing within a climate where there’s lots of pressure and where resources are tight.
Ione: It’s really tricky, and they don’t train you for that. You learn the golden standard and you go out passionate and excited and ready to change lives – and you can do that to some extent – but waiting lists, reduced patient contacts and limited staffing are all barriers. And those barriers become a barrier to people having access to the things that might transform what’s possible for them.
Jess: It must be particularly complicated to navigate as a disabled OT, or someone who has a deep lived understanding of what OT can mean in people’s lives.
Ione: Absolutely, and the richness and the compassion that you want to provide in your intervention, versus this kind of quite superficial assessment, brief Intervention model that you are expected to provide are opposing forces. But I like to think that I bring a lot of spirit, energy, and authenticity into even those brief interactions. Where I can, I will always try and broaden the lens and look at the whole picture, rather than just the challenge at hand, I think it is important to help people recognise and give voice to their strengths, skills, passions interests and goals as well as the things which are challenging for them.
Jess: What was it that interested you about OT and how did you come across it?
Ione: It’s so funny, because when someone becomes an OT, you either know an OT or have been supported by one. No one finishes school and thinks I’m going to be an OT unless you’ve had support from one or your aunt is one. Personally, I was working in a Children’s Psychiatric Hospital as a teaching assistant about 7 years ago and I shared an office with an incredible OT who sparked my passion and my interest. I looked at her role, how she worked with young people, what she was able to support them to explore, experience and express and I thought this is literally a job role that encompasses all the things that I love. That made me excited, and I very quickly applied to be her assistant. I had an amazing few years of working alongside this fountain of knowledge, compassion and creativity, and I knew at that point that I wanted to take it further. I applied to study much later in life than most people. I took a good ten years between completing my A levels and doing a degree, and for me that was an essential ten years, particularly as a disabled practitioner. There’s no way that I would have succeeded and thrived at 19, so I’m glad I came to it slightly later in life, I needed experiences, I needed a better understanding of my own physical and neurodevelopmental differences, access needs, skills and strengths.
Jess: What was your experience of studying?
Ione: I’m smiling right now because even the thought of going back into education was so anxiety-provoking for me. I had such a rough school journey, as so many neurodivergent young people do, especially those who aren’t diagnosed at an early age. My actual school years were really, really tough. I struggled to focus, I spent years in alternative education provisions, I was boisterous, energetic, rebellious, and very strong minded, none of these traits fit in our current education system. My teachers expressed frustration between what I could do and what I would do. I was very much understood to be ‘naughty’ and I strongly believed this. To consider voluntarily re-entering this education system was quite intimidating, I had a strong belief that I wasn’t going to succeed. In addition to Tourettes, I’ve got ADHD and am dyslexic, I find writing really challenging, I have poor working memory and can become distracted easily by things in my environment. However, I’m good with people, and I’ve never met a human I couldn’t meet where they are and have compassion and curiosity for, but if you asked me to write about that, my anxiety flares up.
However, I had a very positive university experience. I had an amazing, also neurodivergent, personal tutor who really got me, who helped me to overcome some of that impostor syndrome. There were challenges and misconceptions: initially, for example, there were concerns around safety for placements and questions about what placements might be appropriate for me. If an OT can’t be disabled, then we’re doing our job wrong. I was met with lots of compassion and curiosity from the other people on my course. I think it was in my third year when a tutor I didn’t normally have, said ‘what’s that noise?’ My entire cohort let out a collective sigh for me, and it was so nice to be able to sit back in that moment and not have to not have to explain myself whist others gave a collective shout of “Its Ione, she’s got Tourettes”, it felt like solidarity and community.
Jess: It’s so lovely when you get to that point, and it makes me think of Mia Mingus’s writing on ‘Access Intimacy’, that experience of people understanding your access requirements. When I was working with children I loved hearing them explaining Tourettes to each other. Having the language and the skills to explain your experiences is really powerful, but it can also be exhausting, and sometimes the allyship of other people stepping in feels amazing.
Ione: Yeah, I agree, it’s such a gift when you feel held and understood. Like you said we’ve grown up having to advocate for ourselves constantly, sometimes with positive responses and other times with ignorance. And sometimes that becomes tedious and repetitive.
Jess: What do you think you bring as a disabled and neurodivergent OT? What’s important about that mix of professional and lived expertise?
Ione: I suppose I bring a lot of compassion. I’m literally described as compassion mountain in my house. I’ve worked in all sorts of settings from forensic settings to those with really complex histories and experiences, and I’ve never met someone I couldn’t compassionately connect with. I think that’s a big part of having lived experience of adversity. I’m also very playful, energetic, and curious in everything I do. I choose primarily to work with children and young people for that reason – it complements my skills, and they always get it. I’ve never had a negative response from children. I think that I’m very driven. I wake up and I’m already trying to redesign the whole service I’m working in! I’m not satisfied unless I’m moving and growing and changing. I guess some of that I attribute to my neurodivergence.
Jess: What do you think OT can offer people with Tourettes?
Ione: So, so, so much. I think there’s nothing that OT couldn’t offer really. Most of us living with Tourettes experience an array of daily challenges from cooking to washing and shopping. These practical, essential daily activities can be really difficult with the constant movement or with the pain and fatigue that comes with tics and commonly co-occurring conditions. OTs should be able to offer advice, equipment, and strategies to help people safely complete these tasks with as much or as little independence as they want and need. What I mean there is, sometimes a person with TS may be unable to safely complete a task such as shopping in the supermarket, an OT could support them to explore how to make that experience safer or more enjoyable, or they could explore how to remove or reduce that experience. We don’t always need to overcome a challenge or complete an activity independently; we might want to remove it completely. I say thank God for supermarket deliveries, it takes away one weekly task which causes me overwhelm, stress, anxiety and an increase In tics.
Additionally, an estimated 80% of people with Tourettes report strong sensory differences and OTs have this beautiful role in exploring someone’s sensory needs and suggesting adaptions and strategies to regulate our sensory systems and improve our capacity to engage with the world around us. Getting curious about my own sensory needs and what works for me, on a personal level, let alone on a professional level, has been so helpful in making the world a bit more manageable.
Jess: I’ve used sensory profiles in previous roles. Could you explain a bit about what these are, and what they help you understand or do?
Ione: So, we’re all sensory beings and we have eight senses which help us to ‘make sense’ of and interact with the world around us. There are the well-known senses like sight, taste or touch. But we also have additional senses that relate to our internal awareness and our movement and where we place ourselves in the world. We all have different sensory needs and benefit from different levels of input. I often use the egg cup, pint glass analogy, some people will need a lot of input (noise, light, touch etc) in order to fill their cup and register that feeling, other people may find a tiny bit of input for example the label on clothing noticeable and distracting and it overwhelms them instantly and their cup overspills. When our sensory cups aren’t full enough or are too full we often see emotional challenges and responses, this could be overwhelm and emotional responses or even spacing out. So, we’re all really different and our individual sensory profile is examples of what we need to meet out sensory needs. We can do this by conversation or formal assessment and It helps us identify sensory input that might overwhelm, distract, or distress you. In fact, some sensory input can feel like pain and can have a big impact on your day, so understanding that and being able to put things in place to meet those needs can be transformative.
Jess: I often talk to families about creating opportunities to normalise talking about our sensory requirements. Modelling and practicing this can be really powerful, particularly in households where there may be multiple or conflicting needs. I’ll often encourage parents, rather than just focus on the sensory needs of their child, to think about their own sensory requirements too, and talk about it openly as a family because that helps take the pressure off individuals and frames it more positively.
Ione: I couldn’t agree more, I do some sensory workshops with Tourette’s Action, for parents specifically. We explore every sense and I encourage them to think about what their preferences are.
Jess: What would you say to anyone who thinks they or someone they care about might have unmet sensory processing requirements? Where would you suggest they start?
Ione: I guess I’d encourage them to reflect and explore the level of impact. So, is it something you can self-manage as a family by exploring some information online, and by trialling some really simple sensory strategies together? Maybe attending a free online webinar – there’s some amazing accessible information out there that can give you some basic tools to start experimenting with. From using weighted blankets to noise reducing headphones or having super-crunchy or strong flavoured snacks. But sometimes people are experiencing sensory differences that are so strong or so extreme that they’re really interrupting their wellbeing. In that situation I’d suggest getting some support and input from an OT and having a formal sensory assessment or screening, although sadly these services aren’t always easy to access. As we get older the services available to us tend to focus solely on daily living functions like dressing or bathing, and managing and supporting sensory needs seems less of a priority even though it can have a big impact on your life.
Jess: It’s so important to think about support and interventions in the context of our lives, our families, and communities. Tics fluctuate and sometimes just as you’ve got used to one set of tics and you’ve got strategies that work, our brains have a beautiful habit of throwing something else in the mix and that can feel quite challenging. But actually, if you’ve had opportunities to take a practical approach to one set of tics then you can often apply a similar approach to new challenges.
Ione: A client said to me the other day, ‘it feels like a game of Whack-a-Mole’ and we’d managed this tic, we’d put a sensory plan in place and then something else popped up.
Jess: Sometimes it can feel like that because of Tourettes, but it can also feel like that because of disabling barriers in the world, they also have ‘Whack-a-Mole’ energy!
There are different types of OT. Can you summarise the different routes in?
Ione: That’s a big question. I’ll start with children and young people because that’s my area. OT is increasingly available within Child Adolescent Mental Health Service (CAMHS), which is fab because I think OT is well suited to mental health support and intervention. OT can be really beneficial for a child or young person with low mood, high anxiety, or other kinds of mental health challenges that can come hand-in-hand with tics and Tourettes. Paediatric OTs can support with sensory needs and sensory profiles. In my experience, lots of young people who are neurodivergent also experience pain and difficulties with things like handwriting or using cutlery. There’s a real opportunity for support and intervention there. As you get older, OT services tend to focus on supporting people to remain in the community or in their own home, or we’re making their homes safer for them, which is obviously incredibly important, but doesn’t necessarily look at the entire picture and all the possibilities, including that person’s leisure or what they want to do outside of their home. Adult OT often focuses on providing equipment, resources, tools, home adaptations, and modifications, wheelchairs, and mobility aids. They support rehabilitation from injury, illness, or accident.
Jess: Over the last few years I’ve had a growing understanding of what I’d describe as oppositional tics and impulses. These involve automatically doing the opposite of what you would want to do in any given situation. For example, touching hard, hot, or sharp objects, or having inappropriate vocal tics in specific contexts. I suddenly realised how deep some of that oppositionality runs. For example, whenever I lie down to go to sleep, my tics increase, and it only recently occurred to me that this probably links to oppositionality too. These complexities in our experiences as people with Tourettes aren’t well understood, but in my experience, OT and practical approaches can make a huge difference.
Ione: Absolutely, I mean, it’s such good point, isn’t it? These types of tics can make the world quite unsafe and often as a result people’s lives get smaller. Whenever I work with someone who tics I tend to start the conversation with the things they no longer do because they don’t feel safe to. Then we try and work together to explore how we can make the world safer for them. There’s so much scope for OT, but it’s often about thinking outside the box. I’ve worked with people who have had amazing success using equipment for people with visual impairments, plates that stick to the surface so when you do some chopping it doesn’t move, or using adapted cutlery or utensils that they’re less likely to break or injure themselves with. I’ve seen you comment on this before, but it’s a real challenge finding adaptations and tools that also go with your dinner cutlery set or a wineglass that looks like a wine glass, and not a sippy beaker, because it’s about identity and connection, and we as humans inherently want to fit in.
Jess: Often with tools and aids it feels like we’re not meant to say that we care about what they look like, but actually it can make such a difference in how you feel about using something and how much pleasure it gives you. I have a profiling bed and when my tics broke the footboard we replaced it with colourful Perspex and the headboard too, and the joy that it gives me is huge.
Ione: Why is everything beige? Life isn’t beige, we’re not beige, we rarely wear beige! Let’s bring our spark into it, and maybe that will make people more likely to use their tools. It moves away from this idea that those aids and adaptations are only used on really bad days whereas actually, they can prevent the bad days.
Jess: The other thing that hearing you speak made me think of, was that lots of health professionals, particularly those specialising in Tourettes and working with children and young people, have traditionally told families about the chances of children outgrowing tics. I think they do that because they feel frustrated about the range of options that they’re able to offer and not feeling like they can fix things for a family. So they suggest that it’s a likely possibility, and for some people, it does happen, and tics do change. But I’ve met young people who are waiting for that, and who are putting off doing the things that are important to them because they’re waiting for their tics to reduce. Have you encountered that and what would your message be to young people in that position?
Ione: Oh, my God, it’s so true and actually, that was my experience. My mum had tics in her childhood, and they were called her ‘rolling twitches’. Then, when she was around fourteen or fifteen, they really settled down, and kind of passed. And so I had tics throughout my childhood, and I was waiting for them to pass, I waited and I waited. Lots the young people that I work with and their families are kind of curious and hopeful for this sudden disappearance of tics. And actually what’s nice is that recently we’ve changed the training content that we offer at Tourette’s Action, which is a big part of my role. We look at the Tourettes timeline and say, okay, 50% of cases reduce, but 50% remain, and of the 50% who reduce, life events and changes, and joy, and excitement, and loss and grief, and celebration, and stress, and hormones, can all re-trigger tics. It’s important that we give voice to this because we’re accidentally tainting tics as negative, as something that we want to grow out of and get rid of. Yes, tics have negative consequences. Yes, they can be painful. Yes, they can be exhausting, irritating, distracting, all the things that we live with, but they can also be beautiful and playful and connective and humorous, and they’re a part of who we are. Rather than waiting for it to go, let’s empower people. This is you, this is the language you can use, this is your community, these are your strengths and your skills. And actually, that knowledge and those self-advocacy skills will last forever, even if the tics don’t.
Jess: The message that saying ‘you’ll outgrow tics’ sends is that you can only live a happy, joyful life if your tics reduce, which can make it harder if they don’t. While Tourettes isn’t straightforwardly degenerative, I think what health professionals often miss is the cumulative impact and the wear and tear on your body of repetitive movements over time. People with Tourettes have more injuries and our bodies will feel that impact more quickly than someone who isn’t hitting themselves hundreds of times a day. There isn’t much joined-up thinking around tics and ageing or about supporting people with Tourettes to keep their bodies as healthy and strong as possible.
Ione: Absolutely, I always refer to it as Tourettes elbow instead of Tennis Elbow. We might have been doing this movement every day since we were six or seven. When you’re a child, running around and moving all day is part of what your body needs. But at 30, and then 50, or 70? It takes it out of you it causes connective tissue and muscular damage, repetitive strain and for many a life of chronic pain.
Jess: If somebody thinks they might benefit from OT what should they do?
Ione: Every area is different – GPs are often gatekeepers for OT services and throughout our lives they can refer us to local OT services. They don’t always advertise this, but you can actually self-refer to some OT services. Most local authorities will have OT you can access through your Council or through social care, especially for assessments of your home and your function to see if there’s physical support, resources, or equipment, that might improve your wellbeing. Those are the main routes in at the moment.
There are areas of OT that as people with Tourettes we can explore for ourselves, and we don’t necessarily need a professional to help in that journey. If we start to recognise the things that bring us joy, or that may reduce our tics or the impact of our tics or help manage a surplus of energy or increase our muscle strength so that all these movements hurt less, these are things we can explore and share as a community. Rather than saying ‘he doesn’t ride a bike anymore, because it’s not safe’ I’d want families to ask, ‘what can we do to make it safe?’
Jess: One of the things I find myself saying a lot is that attention looks different for different bodies and minds. I say it often because I know how important it is to hear, because so much, of the education system in particular, focuses on being still and quiet. But for lots of us, we’re not able to concentrate if we’re using all our energy to stop our bodies moving.
Are there any people or ideas that really helped you connect, either with OT or with your identity as a neurodivergent person?
Ione: Social connection with other people with lived experience was really important to me, going to Tourettes events. Actually, one of the first ones I went to was your performance in London with a group of women I had previously met at an adult Tourettes Action weekend. It was amazing to be around that many people with tics. I’d never been in a theatre space like that, and theatre is one of my absolute passions. The joy of being somewhere where I could focus on the show because I was allowed to tic freely was incredible. And I always say, if I’m not ticcing, I’m probably not really ‘there’ I’m focusing on the uncomfortable session within my body trying to hold those tics in. That experience of being somewhere where I didn’t have to hold it in was so important, as was being with loads of people who loudly, proudly, and authentically were being themselves. I was able to let go of that guilt or shame which was such a powerful process.
Jess: I think that sometimes people are nervous about meeting others with tics and Tourettes, so how would you describe our Tourettes community to anyone who’s new to it?
Ione: It’s incredibly welcoming and open, it’s playful, it’s safe. It can be exciting and overwhelming at times. I think that it’s worth exploring, and it might look really different to different people – for example you might find a community online, or connect through gaming, or speak through text if your tics are easily triggered. And like you said, being able to look at someone and go, ‘Oh, my body gets that, I’m not alone in that’, the benefit is so powerful. Many of the best solutions I’ve used to manage my tics have come from my Tourettes community.
Thank you so much to Ione for this fascinating conversation and for such important insights.