​The primary aim of this website is to encourage and improve awareness and understanding of the neurological disorder, Tourette Syndrome. It is aimed at everyone. In fact everyone who might come into contact with those with the condition or live their lives with it including educators. Other conditions are also touched upon, either because they co-occur frequently in those with Tourette Syndrome or have shared symptoms and hence challenges. We will include interesting and relevant material on Asperger Syndrome and autistic spectrum disorder as many of the difficulties of living with those conditions and negotiating life challenges are similar. There are many over-lapping symptom groups and TS and ASD (or aspects of them) may co-occur in many individuals. There is an especial focus on the problems faced by children and young adults in education and in dealing with the challenges of inappropriate teaching and healthcare provision. The issue of discrimination, disadvantage and inequality is considered in these areas and in employment and higher education/training.

As much positive content as possible will be included to show what those with TS and associated neurodevelopmental 'disorder' can achieve. The media tend to focus more on the negative features and portray more sensational, albeit rarer, aspects of the disorder to increase appeal. We always like to hear success stories that might inspire others to meet their challenges or disadvantages.

We also provide abstracts of scientific and other publications that are relevant to Tourette Syndrome and associated disorders to enable quicker access to current research findings and hope eventually to provide an improved searchable database. Such abstracts provide a valuable resource for those wishing to learn more about evidence-based TS research and may be of interest to everyone.

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This is not, primarily, a support service but rather a means to find the resources, advice and information that may help you. For direct support, there are many excellent National Tourette Syndrome associations and other organisations whose contact details/URLs are available on our 'Resources' page and elsewhere on the site.

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The following assumptions are made:​

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That people with Tourette Syndrome deserve the same opportunities as others and should be protected from discrimination or denial of provision by equality laws
 

That an educators' responsibilities include providing the best education for a particular individual accounting for any educational disadvantage due to 'disability' they may have
 

A physician's principle obligation and professional duty is to act only in the 'best interests' of their patient and only make clinical judgements according to clinical need which must be evidence-based
 

The only reason for misunderstanding TS (including professionally) is a lack of awareness of the existing freely-available literature and information and in some circumstances insufficient advocacy or prejudice
 

Science and clinical evidence, not politics (nor media or popular anecdotal misconceptions) should determine understanding, diagnostic criteria and underpin treatment and awareness advocacy

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It is understandable that many parents and relatives are often bewildered by a diagnosis of TS in their child or family member. Parents in need of advice, reassurance and mutual support form the larger proportion of those who seek contact and information through TS organisations and online resources and are often responsible for a larger part of fundraising and campaigning. Parents want to do the best for their child and do all in their power to help them negotiate the complexities and demands of family life with TS as well as the educational and clinical/therapeutic options and challenges. The internet has helped increase immeasurably the opportunities for developing support and improved understanding and awareness and bring interest groups together across the world and bridge cultural divides.

There is also a growing movement for individuals with TS to want their voices to be heard. More and more people want to represent their interests 'directly' and speak out about what TS is actually like to have from their perspective and tell their stories. Those with TS are themselves challenging many of the misconceptions that have prevailed about Tourette's and many have become effective and high-profile advocates for the rights of those with the disorder and their achievements have helped inspire others to develop a greater belief in themselves and their own abilities and potential. This is something we wish to embrace and contribute to and hope TSfocus will be a small part of this movement for change. We hope the future will be better and that much of the unhelpful, inaccurate and 'denigrating' mythology about the disorder will be reduced for the benefit of all.

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A principle aim is to encourage evidence-based understanding and report on specific known issues experienced by individuals with Tourette Syndrome. Open discussions/advice exchange are possible on a number of existing blogs, forums and an increasing number of FaceBook groups and through attending conferences and seminars. Currently few 'clinical' treatments are effective for the range of 'difficulties' common in TS and most are focused on tics, however, increasingly, pharmaceutical and surgical solutions are reserved for individuals with more severe tic symptoms. A range of non-drug therapies are proving to be effective for many, including life-style approaches, behavioural therapies and supportive strategies within family and social settings. These initiatives also include advocacy, TS camps, meetings and rights and awareness campaigning and are organised by those who have TS themselves, their families and supporters. 

 

Contributors to TSfocus give time freely but do not have resources sufficient to be able to respond directly to all correspondence. Links to excellent online/organisational resources for support and discussion are posted on this site. 

 

TSfocus is NOT intended to be a forum for clinical and scientific debate on Tourette Syndrome or it's associated disorders but links to information on interesting developments and research publications will be posted. Considered discussion and debate on the clinical aspects of TS occurs in the scientific literature where it is hopefully based on accurate data sampling and a peer-reviewed evidence-base. 

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Information presented on this website should NOT been seen as an alternative to obtaining advice from qualified professionals nor form a basis for self-diagnosis or treatment. A consensus opinion on clinical matters should always be sought from licenced practitioners. Clinical evaluation and pharmacological management of Tourette Syndrome and other related neurodevelopmental conditions should involve appropriate health professionals of verified competence. Your national Tourette Syndrome Association should be able to provide a listing of 'approved' specialist physicians. Always read further if necessary. Becoming an expert patient or parent is a great advantage as expertise and familiarity with current evidence is often inconsistent even among professionals and helps you prompt and encourage, in the right direction, those on whom you may depend for clinical, social and educational support.

 

 

About Tourette Focus