Understanding the Co-occurrence between Tourette's Syndrome and OCD
May 24, 2024Guest Blogger | Helen Edgar
Tourette's Syndrome and Obsessive-Compulsive Disorder (OCD) are two distinct types of neurodivergence, each with its own set of challenges. However, OCD and Tourettes often co-occur, leading to a complex presentation that requires a neurodiversity affirming approach to diagnosis and support. This blog post will explore the similarities and differences between OCD and Tourettes, their co-occurrence, and the stigma and misunderstandings that surround them and provide some ways to support people.
This article has been inspired by the webinar delivered by Marie Ralph & Paul Stevenson for The PDA Space which is available to watch at www.thepdaspace.org
I have created a free community resource ebook to support this webinar which is available as a download at www.thepdaspace.org and www.autisticrealms.com
Tourette's Syndrome-OCD Connection
Tourette's Syndrome is a neurodivergence characterised by repetitive, involuntary movements and vocalisations known as tics. These tics can range from simple motor movements like eye blinking or shoulder shrugging to more complex vocalisations such as grunting, snorting, or saying taboo words and phrases. OCD is a neurodivergence that presents as a cycle of obsessions (intrusive thoughts, images, or urges) and compulsions (repetitive behaviours) that cause anxiety and distress.
Stigma and Misunderstanding
Like many neurodivergent conditions, Tourette's Syndrome and OCD are often misunderstood and stigmatised. Tics are involuntary and may appear strange to others who may not understand what is going on. It can lead to social discomfort and misunderstanding. Vocal tics, such as coprolalia, can lead to embarrassment and avoidance of social situations.
Similarly, the repetitive behaviours associated with OCD can be seen as irrational by others. This can lead to social stigma and misunderstanding, hindering the individual's ability to seek help and support as they may feel ashamed.
Treatment and Therapy Options
Tourette's Syndrome and OCD are types of neurodivergence, environment can play a huge part in the quality of life for people. There are several therapeutic approaches that may be suggested these include: Habit Reversal Therapy (HRT), Exposure Response Prevention (ERP), Cognitive Behaviour Therapy (CBT) and Comprehensive Behavioral Intervention for Tics (CBIT). These approaches are commonly used therapies but should be used with caution and only when the person understands and wants this therapy. HRT and CBT have been shown to be harmful strategies for many neurodivergent people and can cause additional trauma as their aim is to change the person’s natural way of being rather than focusing on changes that can be made in the environment. They do not take into effect the possible impact of sensory issues and interoception difficulties (a person’s internal sensory system) a person may have or the impact of masking (Pearson and Rose, 2021 & 2023) or how monotropism (Murray et al, 2005) may impact Autistic/OCD people. Long et al (2024) states that “Research examining the effectiveness of Cognitive Behavioural Therapy (CBT) for OCD in autistic youth has shown that self-reported symptom improvement is significantly less compared with neurotypical individuals (K. Murray et al., 2015)."
The Impact of Suppressing Tics
While therapy can be beneficial for some, it's important to be cautious about the potential harmful consequences of certain therapies. Suppressing tics can sometimes lead to an increase in other tic symptoms or the development of new ones. This is known as tic rebound or tic substitution, where the suppression of one tic leads to the emergence of another it can also lead to tic / OCD rage and for some Tourettic people can cause cluster tic episodes and seizures.
Similarly, suppressing compulsions in OCD can also have negative consequences. Compulsions serve as a way for individuals to cope with their obsessions. When compulsions are suppressed, the anxiety from the obsessions can increase, leading to more frequent and intense compulsions or trying to gain relief in other ways. This does not mean we should encourage obsessions and compulsions as if you give OCD an inch it will generally take a mile and grow, rather we should try and alleviate anxiety and lower demands so the impact of OCD is not so detrimental or disabling.
Creating a Supportive Environment
A supportive and understanding environment can make a world of difference. Family members, friends, and colleagues can be educated about OCD and Tourettes to provide appropriate support.
Creating a safe space for individuals to tic or perform compulsions can also be helpful. This could be a designated area at home or work where the person can engage in their tic or compulsion without fear of judgement.
The key to providing neurodiversity affirming support is understanding and making changes in the environment and offering flexibility through the day. By understanding the challenges of Tourette's Syndrome or OCD, people will be able to thrive in ways that work for them.
Note: The blog post is based on a webinar delivered by Marie Ralph and Paul Stevenson, which was part of The PDA Space Portal (May 2024).
Signposting:
- Paul Stevenson: www.linkedin.com/in/paul-stevenson
- Marie Ralph: www.linkedin.com/in/marie-hutchinson-ralph-bcae-âû (Creative Neurodivergent on Facebook)
- THE PDA SPACE: www.thepdaspace.com - Family support workshops, webinars, coaching and online peer support groups. (Founder: Nicola Reekie)
- AUTISM UNDERSTOOD: www.autismunderstood.co.uk - Website designed by autistic young people, for autistic people by Spectrum Gaming
- AUTISTIC REALMS: www.autisticrealms.com Autism/ education/ mental health articles and resources (Founder: Helen Edgar)
- TOURETTES ACTION UK: www.tourettes-action.org.uk
- TMI (TOURETTE MAMAINSIGHTS): www.facebook.com/tmitourettemamainsights
- SEDS CONNECTIVE : www.sedsconnective.org/
- PANS PANDAS UK: www.panspandasuk.org
- TOURETTESHERO: www.touretteshero.com
- Autistic Community of Cornwall: www.theautisticcommunityofcornwall.org
- OCD ACTION UK: www.ocdaction.org.uk
- OCD UK: www.ocduk.org/ocd/
