Tics in the room and tics on Zoom

SA: Can you provide a little overview of yourself?

Becky: Hi Seonaid – I am currently an NCS accredited senior therapist and counsellor for a trauma and crisis charity, alongside recently starting my own private practice… I have experience across a few settings including the NHS. My background is in Psychology and I have worked as a Psychological Wellbeing Practitioner before training as a Psychotherapist. I have recently written an article about practising as a therapist with Tourette's syndrome for the Psychotherapy and Politics International Journal. 

SA: So having Tourette's Syndrome – can you tell me a little more about that? When were you diagnosed, what kinds of tics do you have, what kind of impact does it have on your life?

Becky: So, mine started non-typically – my tic symptoms started when I was 14-years-old as a response to a period of turmoil and high emotional stress I was going through at the time. I didn't really know what was going on, it was a bit scary as I didn't know what it was, so I went to the GP and went to see a neurology specialist who diagnosed me with Tourette's. 

I don't suffer with severe tics – they were actually a lot worse when I was younger compared to what they are now. I don't have the coprolalia (swearing) form of Tourette's either, but I have coughing, twitching, clapping, hitting myself, facial expressions, and neck jerking. Occasionally when I am stressed or anxious, I will have vocal tics and I also sometimes get echolalia – repetition of sounds or words I hear. 

It doesn't have too much of a physical impact on me, I do quite well managing it with a combination of medication, exercise, and meditation and calming techniques… music is the best thing for me actually, I never tic at all when I'm listening to or playing my music or my instruments. 

The worst thing for me is probably the social impact – I'm always worried what people are going to think of me. I've had funny looks and stares in the past, that kind of thing. I tend to find myself trying to suppress a lot when I'm in company, especially if it's someone I haven't met before. I still don't think Tourette's is well understood enough or accepted in society. 

SA: So, I've met lots of therapists and clinicians who offer behavioural therapy for tics. Have you ever tried the therapy yourself for your own tics?

Becky: I am familiar with CBIT [Comprehensive Behaviour Intervention for Tics] as an approach for Tics, but I've never actually tried it for myself. Like I say, I can manage mine well enough with what I do already usually.

SA: I have only met a couple of therapists who are treating tics with behavioural therapy who have tics themselves. Although you have not treated people with behavioural therapy to help them with their tics, can you tell us about what kind of therapy you offer?

Becky: I am a Humanistic Integrative Psychotherapist, which means I combine a range of approaches and theories to what best suits the individual. I work with a wide range of clients and presenting issues. I very much believe in taking into account every aspect of a person when it comes to therapeutic interventions. I offer both long- and short-term therapy, with both solution focused and longer term approaches. My go-to model is Transactional Analysis, but I also use elements of CBT, DBT, Mindfulness, Gestalt, Guided Affective Imagery, and Jungian and Psychoanalytic approaches just to name a few. Typically for tics I would adopt a solution focused behavioural approach such as DBT. 

SA: Are there any challenges you face as a therapist, with tics, delivering therapy?

Becky: Yes, quite a few. With Tourette's I always have the problem that it is very physically obvious and apparent that there is something going on with me. The motor and vocal tics are immediately noticeable. This can sometimes cause a discomfort with clients, particularly during the initial meeting or assessment session. I can see, as in other cases when meeting someone for the first time, there is a mixture of curiosity, uncertainty, and not wanting to offend. Also of course if I am working with a client who also suffers with tics, my tics can exasperate theirs and vice versa. 

I find it important to address this 'elephant in the room' to make clients feel more comfortable, so I make it explicit what is going on and explain about my condition. This usually brings about relief for the client, which of course I am pleased about. Yet, I feel I do not have much choice about disclosing and talking. I sometimes wonder how differently I would feel if I had a condition that did not have physically obvious symptoms, how I would probably not be put in the same position. It does feel vulnerable and can lead to a feeling of being unworthy or not good enough. 

SA: Have you ever experienced judgement or stigma from patients or from others in the profession?

Becky: Yes, I have. It is actually mainly other therapists I have received the judgements from. I do not usually mind people asking me questions about my condition, as it can show that they are willing to try and understand me and what I need, and how my differences can be supported. However, when someone starts a sentence with 'I don't want to be offensive, but…' you can usually tell the kind of thing that will be coming next. 

Biases from therapists towards other therapists, particularly centred around identities/lived experience, seem easily to get framed around fear of 'client impact' in some way. I have had people ask me if I consider the impact my condition will have on the therapeutic relationship. How I think my clients will be impacted. As if being neurodivergent makes me less suitable to work with certain client groups such as severely traumatised people as I will find it more difficult to empathise. That my tics will cause a distraction in the room which will make it harder to build a therapeutic relationship and maintain relational depth. 

I feel that what is said to me highlights how difficult it can be at times to accept our own prejudices, instead trying to deflect them or reframe them as something else. Deeming me potentially unsuitable to work with clients because I have a condition shows a lack of understanding and awareness, and is discriminatory – just as it would be if I had applied for a job and been told I was unsuitable for that position due to my condition. I feel it's important that as therapists, we are always in a process of reflecting on our own biases, so as to reduce the risk of harm. 

SA: During the recent pandemic have you experienced any impact on the way you work?

Becky: Yes, to start with during the first few months of lockdown I had quite a big drop in client numbers and referrals, particularly in the older generation who were not comfortable having therapy online or over the phone. This also resulted in a considerable drop in income. Clients and therapists alike have all had to adapt to a new way of working – it's also strange to experience that equilibrium of us all going through the same trauma at the same time. I've returned to some limited face to face work now, but mainly I'm using Zoom, WhatsApp and phone for sessions.

The advantage is that I've been able to work with clients from all over the country, not just my local area, which makes for a wider range of experience. Working online is certainly more intense than working face to face. I've noticed this has an impact on how I'm feeling throughout the day, I've been feeling more tired and run down and I need to do a lot more self-care. 

SA: I've heard from patients with Tourette Syndrome and in the tic disorders community that during the pandemic they have experienced an impact on their tics and mental health; with anxiety and uncertainty people have noticed their tics increasing. As a therapist with tics, have you noticed this yourself?

Becky: Yes, absolutely. Mine definitely increase during periods of stress anyway, and I have noticed an increase in tics and tic frequency since the beginning of lockdown. I've also developed quite a few new ones. It's an anxiety provoking situation for sure, and with all that's going on to think about and worry about it leaves me less room for tic management. 

SA: As we know there are some people with tic disorders also have vocal tics which look very similar to some Covid-19 symptoms, these tics are highly suggestible. They include tics such as sniffling, spitting, sneezing, coughing and upper respiratory tics (Covid-like symptom tics). Have you heard of, or experienced this?

Becky: Yes, I have. Coughing and clearing my throat was one of my tics anyway and I suppose the generalised anxiety of catching the virus may have brought that out more… can't speak for others, obviously, but just my take on it. With everyone's anxiety around the virus if you do this around others it will tend to illicit a hostile response, which can be saddening. 

SA: Can you talk a little about having TS and being in public? I would imagine this will exacerbate anxiety and will no doubt also increase these suggestible tics which are especially difficult during the current health pandemic. People with tics can have sensory sensitivities too, which may mean they have issues wearing masks.

Becky: Sure. As I mentioned before I have had some experiences in the past of being in public and ticcing where people will stare at me, kids will point, laughter, that kind of thing. I know that something which is unusual and strange will bring out people's natural anxieties – however that isn't an excuse, it's rude and quite hurtful, as I'm sure it is for many other Tourette's sufferers. 

This pressure of knowing that people are looking at you and judging you definitely causes more discomfort and anxiety which of course will exasperate the tics – it's a bit of a vicious cycle really. Obviously the coughing tics at the moment are what people pick up on and judge you for, and although I'm not exempt from wearing a mask myself I can totally hear what you're saying about people judging ticcers for that too… people are very quick to judge something they don't understand or don't understand fully. 

It shouldn't be like this. I think there needs to be more information and education out there to address these stigmas, and we need to look inwards on our own judgements and biases about individuals with a disability, as it isn't the sufferers responsibility to make us feel more comfortable. 

SA: How have you coped personally with the pandemic? What coping strategies have you used?

Becky: Music has been, and always will be my biggest outlet. I always find music so calming and it's something I can just immerse myself in fully, I find that when I'm concentrating on a task like playing my guitar my tics are reduced and it really directs my focus to what I'm doing. It's very grounding. 

I'm also on Beta blockers for a heart murmur that I've had for a couple of years, but I can take them for anxiety as and when too and it really takes the edge off the physical symptoms. Also as I mentioned before mindfulness techniques and behavioural techniques really help with the tics. I think freedom from having to suppress is also key, when I'm around people I know and trust, and feel comfortable in myself, there's definitely a lot less pressure there. Staying connected to people has definitely been a big help too. I'm so grateful for modern technology. 

SA: I know you've made the case for the counselling profession to be more aware of neurodiversity and educated about conditions such as tic disorders. What do you think would make the biggest difference?

Becky: I'm always so grateful when a colleague asks me 'What can we do/is there anything you need to help you feel more safe/secure/supported?' I feel like these are such important questions, and ones we should always be asking our neurodiverse clients too. I think there's a knowledge gap and a lack of good, in depth training around working with neurodiversity, particularly Tourette's, I certainly haven't seen much to date. I feel it would be key to develop a framework or include this in mandatory training for students, so nobody is going into that kind of situation unprepared. 

I also haven't seen much CPD around this topic. I think there's still a lot of practitioners, particularly those of an older generation to myself, who are lacking in knowledge and experience of neurodiversity. It's essential that these knowledge gaps are filled so as to reduce the risk of harm to clients, but also to neurodivergent practitioners such as myself.

SA: You said recently 'When working with neurodivergent clients, my lived experience and deeper understanding of what it is like to be neurodivergent help to strengthen the trust and relationship and can lead to greater relational depth – a feeling of profound connection and understanding between client and therapist'. This surely is a situation where the impact of your condition hugely benefits the therapeutic relationship – if we think about Jung's 'wounded-healer' concept in psychology?

Becky: Yes, absolutely – there's always a reason why we do what we do, and we all have a history. The idea that therapists have got it all together and are always doing great 100 per cent of the time is completely false! Certainly, from my perspective as a client, if I feel as though the therapist can relate to me and has been through similar experiences, I feel a lot more comfortable and able to form a relationship with them. This has been feedback I have received from several of my clients also. We can have all the qualifications and training, which is great and absolutely valuable, but at the end of the day we are sitting in the room with another human being.

SA: As a therapist and counsellor your specialism is in trauma and crisis. What do you think of the idea that due to the pandemic as a society, we are all undergoing a collective trauma, which will affect us for years to come?

Becky: I completely agree. I think the reality of the situation is that we just don't know the wider impact of this situation yet. There's a lot of questions we can't answer. I think in time we will start seeing more and more people needing therapy for the resulting trauma this situation has brought to us all, and when it is all over there will be visceral relief, but the residual trauma will still be there in the background – it's important not to ignore that concept. I think the government need to take this seriously and be more prepared and provide the funding and access to therapy that is so needed. There are thousands of qualified, registered and competent therapists and counsellors already available, and being utilised privately – so why not call upon them?

SA: Would you have any message or advice to the Tourette's and Tic Disorder community, about getting through the pandemic?

Becky: Stay connected to others, and don't be afraid to ask for help if you need it. There are more of us out there and we are never alone – if we share our vulnerabilities and worries with others it's far better than trying to cope with it all on our own. We will get through this! 

- Becky Simpson is an experienced humanistic integrative therapist and a senior counsellor accredited with the National Counselling Society, and a registered member of the BACP. Becky has her own private practice Bishop Auckland Counselling and Psychotherapy. Website: www.bsimpsontherapy.com Twitter: @stigmainthebin Email: [email protected]       

- Seonaid Anderson is a chartered psychologist and freelance neurodiversity consultant with many years' experience in neurodevelopmental disorders.

https://www.neuro-diverse.org/ and on Twitter @Seonaidanderso2

Editor's note: This piece was originally published online on 18 December 2020.