Spelling out the opportunities: dyslexia, tics and Tourette Syndrome

As always Neuro-diverse stays up to date with what is new in research but also there is a place for driving forward with attempts to increase the visibility and awareness of Tourette syndrome.

This blog focuses on MP Matt Hancock's drafting of a Dyslexia Screening and Teacher Training Act. What is the relationship between dyslexia and Tourette syndrome? Tourettes syndrome is common like dyslexia and in fact theyf requently co-occur together. This blog argues that if this bill was changed to include neurodivergent conditions such as tics and Tourette syndrome potentially it could have a far greater impact on the educational lives of children in the UK.

I am part of a group of academics, healthcare and educational professionals, charity representatives, and lived experience advocates, who are committed to improving access to services and support for children and young people with tics and Tourette Syndrome (the Tourettes Syndrome Guidelines and Services Steering Group). Recently the MP Matt Hancock drafted a Dyslexia Screening and Teacher Training Act. This steering group feel strongly that this has the potential to highlight a path for better support in schools for children and young people, not just with dyslexia, but with neurodivergent conditions. However, we would argue the bill is not detailed enough to ensure help for those who need it. If the wording of the bill could be c hanged so that it lists specific neurodivergent conditions, this could be a massive help to the many thousands of children who have tics and tic disorders such as Tourette Syndrome. Tourette Syndrome is often a forgotten neurodivergent condition and as such many teachers and education staff know very little about it. Tourettes is often perceived as a rare condition, but it affects at least 1 in 100 school aged children which is a similar prevalence to autism, and yet there is a worrying lack of awareness and understanding amongst the teaching profession. It also co-occurs frequently with other neurodivergent conditions, including dyslexia. This matters because research evidence shows that children and young people with Tourettes are disadvantaged due to lower than expected academic attainment, bullying and victimisation, and subsequent mental health difficulties and unemployment. Sadly, they are also 4 times more likely to die by suicide in adulthood and tics often cause pain, injury and physical disability. Children and young people with tics and Tourettes are often ostracised at school. They do not receive the support and understanding they so desperately need. This lack of understanding often comes from education professionals, not just the children’s peers. What is required are significant improvements t othe support offered in schools to children and young people with tics and Tourette Syndrome so that they have better futures.

A first step could be in making tics and Tourettes a formal part of the initial teacher training curriculum. By re-wording the Dyslexia Screening and Teacher Training Act so that it includes ‘neurodivergent conditions’ (such as tics and Tourette Syndrome) this will ensure these neurodivergent conditions are represented and that they receive equal focus in teacher training provision.

We can acknowledge it's good that Matt Hancock has lived experience of dyslexia himself, this may be what motivated him to take on the drafting of this Dyslexia Screening and Teacher Training Act but it would be a lost opportunity not to include other neurodivergent conditions to the benefit of so many more young people. The benefits of the suggestions made here cannot be underestimated - not only would young people be better supported in school and have better outcomes but teaching colleagues could be equipped with the skills and understanding which would serve students and the communities they live in, in a much more inclusive and better way.

The Tourettes Syndrome Guidelines and Services Steering Group includes:

The University of Nottingham, Institute of Mental Health, Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan: https://www.institutemh.org.uk/research/candal/about-candal

Tourettes Action www.tourettes-action.org.uk

NIHR MindTech MedTech Co-operative, Institute of Mental Health, University of Nottingham https://www.mindtech.org.uk/

Neuro-diverse www.neuro-diverse.org

ADHD Foundation – the Neurodiversity Charity https://www.adhdfoundation.org.uk

Should you wish to contact the Tourettes Syndrome Guidelines and Services Steering Group, please e-mail Dr Maddie Groom (Chair of Steering Group), Associate Professor, University of Nottingham maddie.groom@nottingham.ac.uk

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